Selected newspaper article reprints about people of short stature, including SSPA
members, as well as short stature in general from newspapers and magazines
around Australia. These reprints date from July 2000 onwards.
For articles from around the world about people of short stature and short
stature in general, go to
http://www.shortsupport.org/cgi-bin/news_list.cgi
Sisters' plea for help
Leader-Cranbourne Sun (Victoria, Australia), 19 January 2000, p. 14.
SARAH
Whitaker is 13 years old and has never been able to walk down to the corner
store near her Cranbourne North house.
Sarah, and her 10-year-old sister Chloe, have two different conditions that
combine to severely restrict their mobility.
The conditions are known as achondroplasia and pseudo achondroplasia. Both are
types of dwarfism. A combination of the two is extremely rare. Sarah and Chloe's
younger brother, Tim, and sister, Georgia, each have one of the conditions. The
children have been living with their parents, Jim and Leisa, in the Cranbourne
North house until a custom-built house is erected for them nearby. Everyday
tasks such as using stairs, sitting on a normal-sized chair and turning on a
light switch will be made much easier at the new house.
But the children remain at a disadvantage when they return to school. Leisa
Whitaker said Sarah can only walk a distance of about 20m before it becomes too
painful and exhausting.
So the family is trying to raise money for two $1900 scooters for Sarah and
Chloe from the United States, which will allow easier mobility around school and
home.
``It will just make life a lot easier for them. At the moment if we go out
anywhere they have to be put in strollers and as you can imagine that's quite
embarrassing for a 13-year-old,'' Mrs Whitaker said.
SYDNEY, July 3,
AAP - Dwarfism was not the end of the world, the Short-Statured People of
Australia (SSPA) said today.
SSPA spokeswoman Megan Lilly said she would be concerned if foetuses were being
terminated simply because they suffered dwarfism.
It follows the termination of an eight-month-old foetus, diagnosed with
dwarfism, in Melbourne's Royal Women's Hospital.
The hospital has since suspended three senior medical staff and asked the
Victorian coroner to investigate the abortion, carried out on the 40-year-old
woman who became suicidal after learning the diagnosis.
"I think we have to have a lot of compassion in this situation," Ms Lilly said.
"We don't know the full details either.
"There is a fairly significant degree of concern where there is a non-life
threatening disability that the termination was performed at that late stage of
pregnancy.
"There are many, many short-statured people who have gone on to have very long,
fulfilling, totally normal and fantastic lives.
"Dwarfism does not need to be an impediment."
Ms Lilly said there were 2,000 short-statured people in Australia, and some 300
different forms of the genetic disability.
She said there was considerable support for people suffering dwarfism, both in
terms medical help and support.
"The only disadvantage that short statured people suffer is a lack of reach and
other people's attitudes."
Ms Lilly, who has a short-statured daughter, Samantha 11, said she did not know
about her daughter's condition until after her birth.
But it would have made no difference in her decision to keep the baby, she said.
Meanwhile, Australia's first short-statured couple to give birth to two children
without the achondroplasia gene said they didn't care what size their babies
were.
Michael and Debra Connors are the parents of Ben, three, and Nathan, six-weeks.
"Its never mattered whether the children were short-statured or not," Mr Connors
told Woman's Day in an article published today.
"All we've ever worried about is them being healthy."
"I don't see my children of being any particular size, they are just my
children."
Ms Connors would not comment when contacted today.
BETTER understanding of what causes dwarfism is helping people with the
condition raise healthy families.
Clinical geneticist with Victorian Clinical Genetic Services Ravi Savarirayan
said scientists had found the gene responsible for achondroplasia, the most
common form of dwarfism.
He said the gene was vital in cartilage development. ``We know what goes wrong .
. . the next step is to work out what the protein is doing and how the error is
caused,'' Dr Savarirayan said. ``Increased understanding of
the mechanisms that cause various forms of short stature and dwarfism is going
to lead to an increased ability for families to pursue pre-natal diagnosis for
reasons of reproductive choice.''
Dr Savarirayan will discuss genetic issues at the Short Statured People's
Association of Australia annual convention this week at Blampied, near
Daylesford.
He said while there was no cure for the condition, improved knowledge was
leading to better management through improved orthopedic therapies.
Dr Savarirayan said where both partners were of short stature, there was a 25
per cent chance the child would grow to average height, and a 50 per cent chance
the infant would also be of short stature.
For details about the conference, call the association secretary on 9388 9709.
AN Australian expert on short stature disorders will be in Cairns this week
to meet locally affected children and their families.Professor David Sillence
from Sydney will hold consultations for the first time with a number of North
Queensland children of short stature (dwarfism), some of whom are coming from
Charters Towers, Mackay, Townsville and Ravenshoe for the clinic and a social
get-together during the weekend.
Co-ordinator of the North Queensland branch of Short Statured
People of Australia, Heather Knuth of Charters Towers, said it was the first
time the group had met in Cairns.
She said the gathering would have the dual purpose of seeing Professor Sillence
for medical consultations and enjoying a social get-together with a network of
members.
"The parents get advice, encouragement and support and the short stature kids
get to know their other short friends, which is vital as they grow up, to know
they are not alone," she said.
David Sillence is Professor of Medical Genetics at Westmead Children' s Hospital
in Parramatta, Sydney, and is a medical adviser to the SSPA group. He is
Australia's leading medical professional on short stature disorders and has done
extensive work on the genetics of bone disorders.
While in Cairns, he will also address the Australasian Society of Genetic
Counsellors and attend the annual scientific meeting of the Human Genetics
Society of Australasia.
The NQSSPA will hold a barbecue lunch on Saturday at 5 Ginger Close, Redlynch,
from 11.30am-3pm.
For further information, contact Shelley Patterson on 4039 1543.
Grant Patterson and Chris Diehm may be short in stature, but they' re big on
ideas for the future - and the Athens Paralympics are just part of the plan.
TWO different kids. Two different problems. Same result. For Chris Diehm, it was
a simple lack of collagen. For Grant Patterson, a deficiency in sulphur. For
both, there was a clash of genes and a dashing of hopes that either boy would
become a six footer.
Chris and Grant - longtime friends and near neighbours from Cairns - suffer from
rare disorders with tongue twisting names that have stunted bone growth and left
both severely short in stature.
Chris, 15, was born with spondyloepiphyseal dysplasia congenita (SED), which has
resulted in a lack of collagen - needed to create bone, ligament and cartilage.
Grant, 12, has diastrophic dysplasia (DD) and is sulphur deficient, resulting in
lack of cartilage around his joints.
At 138cm, Chris already has been outstripped by his 12-year-old brother Sean,
while Grant's 114cm frame now is overshadowed by that of his seven-year-old
brother Mitchell.
But physical stature aside, these two have become giants in the sporting arena
and a match for anyone in the classroom.
Both have entered the ranks of Australia's elite disabled swimmers - qualifying
for this year's National Junior Disabled Games and breaking 34 national records
between them in a single swimming season. In the process, they have slashed
their International Paralympic Committee world rankings and been earmarked as
contenders for the 2004 Athens Paralympics.
Members of the Cairns Trinity Aquatic Centre under coach Adam Luscombe, they are
within a tumble turn of a top 16 world ranking, at which point they qualify for
Queensland Academy of Sport funding and eligibility for Paralympic selection.
Earlier this year, both qualified for the British National Multi Disability
Championships (though the team was cancelled due to lack of funding) and Grant
was named Male Swimmer of the Meet at the State Swimming Championships in
Brisbane - a title previously only held by Paralympians over the age of 18.
Chris had been runner-up to those Paralympians in the previous two years.
For Grant, his enjoyment of - and success with - swimming is a turnaround from
his earliest days in the pool.
"I thought it sucked at first. I didn't think I'd be a good swimmer. Now, my
biggest goal is to swim for Australia at the Paralympics in Athens and win a
gold medal if I can."
The superhuman performances of the two are all the more spectacular given their
shaky start to life.
"They virtually said he was going to die," says Shelley of the doctors' less
than rosy outlook when she and husband Steve had Grant in May 1989.
It was much the same story Jewel Diehm heard when she gave birth to Chris.
"The prognosis for him wasn't particularly good from the medical fraternity
because they didn't really know what he had."
Both boys were born with club feet and cleft palates. Grant had a shortened
trunk, short
limbs and a very large head. Chris had a very small body, but his severely
crippled and wasted limbs were in proportion.
"His feet were very deformed," says Jewel, "and his lungs were very tiny, so he
had respiratory problems. He still is asthmatic."
Neither woman had any warning something was amiss.
"It wasn't until an hour or so before I had him that they did a scan, " says
Shelley. "Grant was breech and they discovered his head was very big. What they
told Steve and I was very gruesome. They just didn't know what was wrong with
him."
Jewel: "I didn't discover it until he was born - and Chris was born two months
premature, which compounded all his medical problems."
Grant was diagnosed with DD within a month.
"He had some classic features," says Shelley, "and one of them is the
hitchhiker's thumb. When he was born, his thumb was bent back. His hands were
also quite broad, his fingers short and his bones fused. They were classic
features of diastrophic dysplasia. Virtually no other disorder has that."
Jewel and Garry Diehm waited a little longer to discover the cause of Chris's
problems.
"It took a trip to Brisbane two months later to find out what Chris had and then
it took until he was six for us to get really good, solid information."
In the end, it was a magazine article in the Australian Women's Weekly that set
the Diehms on the right track.
"I found out about a support group in Sydney and that there was a clinic in
Sydney that looks after children with bone dysplasias," says Jewel.
The clinic was that of Professor David Sillence, head of medical genetics at the
Westmead Children's Hospital in Parramatta. He is Australia' s leading medical
professional on short stature disorders and has done extensive work on the
genetics of bone disorders.
"We saw him for about two hours," says Jewel. "We learnt more in that two hours
than we'd learnt in six years."
Grant - one of five children in Australia with his particular disorder - also
has travelled to Sydney to see Professor Sillence, who now is thoroughly
familiar with the pair.
In a freak of nature, Grant suffers from an inherited disorder which neither his
parents, grandparents or any other family member is known to have had. Quite
simply, his parents were both carriers of the wrong genes. In Chris's case,
there was unexplained damage to a vital gene.
"Because my husband and I don't have the disorder, they came to the conclusion
that it was a new mutation," says Jewel Diehm.
Chris has a 50 per cent chance of passing his disorder on to any children he
has. In Grant's case, the inheritance factor depends on whether he marries
someone like himself or an able-bodied person.
Shelley and Jewel say they had to think carefully before having a second child
and the pregnancies were closely monitored.
"Doctors took a lot of precautions," says Jewel, "and there were no problems.
But it's always in the back of your mind that whatever went wrong and caused the
problem in the first place, could reoccur. You just don't know."
Shelley says there was a 25 per cent chance her second baby would be born with
Grant's disorder.
"So it is a really huge decision as to whether you want to go ahead and have
another child and it's very clinical. There's nothing nice and lovely about it.
It's very planned and ritual and we flew to Brisbane a couple of times to make
sure Mitchell was OK."
Adding an able-bodied child to the home was an experience in itself.
"It's like having a terrorist in the family," says Jewel. "I'd never had the
experience of a toddler that took off across the road or ran riot in the
supermarket."
Shelley likened Mitchell's arrival to a tornado. "It was a nightmare. We had to
tie the doors up because he'd worked out at 18 months how to unlock them. Grant
never got into that mischief. But it was good for Grant. I think that's what
helped build his character."
Jewel says her second son, Sean, has been Chris's greatest supporter.
"If it's going to a swimming carnival, he'll carry Chris's swim bag, make sure
he's ready for his races and help him in whatever way he can. He's carried
Chris's port to school, helped him with books and fought a lot of battles for
Chris along the way."
The care that began when Grant and Chris were born, continues today. At the
beginning, it was the difficulties of feeding a baby with a cleft palate or
sleeping with one eye open in case of respiratory troubles.
Then came the surgery. Chris has had 17 hospitalisations to correct his club
feet, reconstruct both hips and rotate his legs into the right position. All
have been successful and he finally got to walk unaided at the age of 10.
Grant has had major surgery as well, but sadly, none of it worked. Having walked
between the ages of two and five, he is now dependent on a custom-made tricycle.
Further surgery has been ruled out.
Even simple things in life present difficulties.
Finding suitable clothing and shoes is an ordeal. Chris needs Size 8 clothes,
but most are totally inappropriate for a teenager. Thus, additions to the
wardrobe often require alterations.
School has been - and continues to be - a problem. Playground equipment, water
fountains, chairs, desks, door handles, shelves and toilets all are designed
with the average-sized child in mind.
Chris found his usual school - Trinity Anglican School in Cairns - very
accommodating. Less so is the Australian International School in Singapore,
where he is studying this year. It's spread over three levels, without a single
lift. For Grant, who enters high school next year, there was little choice.
"A lot of the high schools in Cairns are on different levels," says his mother,
"and there's no lifts available in those schools.
"At the moment, we're leaning towards Smithfield High - being low level and
because they've got a really good technology department, which Grant would like
to get into. It's a good option for him, since he's not going to be a bricklayer
or anything like that."
Attitude is another headache.
"People have this misconception that size equates with age," says Shelley. "When
Grant started swimming last year, he was put in a group with five and six year
olds. When that happens, you wish you could get people and shake them."
Some assume the disorder is not just physical.
"People see Chris in a wheelchair and feel that he has an intellectual
disability," says Jewel.
If anyone can put them right on that score, it is Chris himself.
"You've just got to be able to see past the design flaw and you'll find a normal
person," he says with a maturity far beyond his 15 years.
HE is a little man with a lot of power. But that does
not stop West Australian Liberal Senator Alan Eggleston facing the odd practical
difficulty as a result of his short stature.
And spending an entire day dealing with the lofty height of Federal MP Barry
Haase in Kalgoorlie-Boulder this week surely could not have helped.
But when it came time to officially launch Mr Haase's campaign in front of a
70-strong crowd, Senator Eggleston proved a sense of humour was certainly
something on which he was not short.
Master of ceremonies Doug Daws - not a person HOH would describe as particularly
towering himself - handed over the podium to Senator Eggleston.
Amid the rousing applause of the Liberal Party faithfuls it was realised there
was not a chance the Senator would be able to reach the microphone.
Luckily the mouthpiece was detachable and the proceedings could get under way,
but not before Senator Eggleston quipped that there were times he was sure there
was a conspiracy against short people.
Dwarf files giant suit.
The Gold Coast Bulletin (Queensland, Australia), 1 December 2001, p. 59.
A TAMPA radio broadcaster known as 'Dave the Dwarf' has sued to overturn
Florida's ban on 'dwarf tossing'. He says he should be allowed to decide for
himself whether to participate in the bar-room contests in which dwarfs don
harnesses and allow bar patrons to hurl them through the air on to mattresses.
Florida banned it in 1989 amid intense lobbying from the advocacy group Little
People of America, which said the contests were demeaning and encouraged people
to treat dwarfs as objects.
Bars that allow the contests can be stripped of their liquor licences.
David Flood, 37, who is 96.5cm tall, filed suit this week in the US District
Court in Tampa. "As soon as you have a physical handicap - they treat you like
you don't have a mind of your own," Flood told the Tampa Tribune. "Just because
I'm 3-foot-2 doesn't mean I can't make decisions."
THE Catholic Archbishop of Melbourne has taken an unprecedented swipe at the
coroner's ruling over an aborted 32 week-old fetus. Archbishop Denis Hart
branded Jacinta Heffey's decision that she did not have jurisdiction to hear the
case a "serious misjudgement".
The Royal Women's Hospital referred the csse to the coroner following the
late-term abortion in February 2000.
A suicidal 40-year-old woman had the fetus aborted after it was diagnosed as
having a non-lethal form of dwarfism.
Archbishop Hart said the law seemed to permit ever-widening boundaries for
abortion and he was mystified by Ms Heffey's ruling.
``I believe it's a serious misjudgment of the relevant issues,'' he said.
Archbishop Hart said while he respected Ms Heffey's competence, and that she
should administer the law as it stood, there should have been an inquest.
He said the fetus was above the age at which many children were born in
Melbourne.
``If it is true that our laws do not protect children in such cases -- indeed do
not even allow a full coronial inquest -- there is something seriously wrong
with our laws.''
A spokesman for the coroner's office said Ms Heffey had reviewed the hospital
records and concluded she had no jurisdiction because the baby was stillborn.
He said the coroner's court only had jurisdiction over reportable deaths and
since there was no birth there was no death. Ms Heffey made the ruling in
chambers.
Attorney-General Rob Hulls was awaiting legal advice on the matter, a
spokeswoman said.
Lawyer Adrian Anderson said the coroner had made an interpretation that there
was no death.
In the Births, Deaths and Marriages Registration Act, stillbirth is excluded
from the definition of death.
He said it would have been open to Ms Heffey to make a different ruling, but
that would have required a very bold interpretation of the Act.
``It would have been a very progressive decision,'' he said.
``It would have been a landmark decision if she decided that (a death had
occurred).''
Archbishop Hart called for a moratorium on abortion to allow the Government to
reconsider the balance between the rights of a mother and an unborn child.
``I respect the coroner and I respect the information the coroner has to which
I'm not privy, but there is an underlying public issue of the rights of the
person that we neglect to our peril.''
Archbishop Hart said all abortion was killing and this particular case was
abhorrent.
``Are there to be no limits to abortion and infanticide in this state?' '
He said children with disabilities had a right to life and deserved special
protection.
``We should never buy into the mentality that short-statured people are better
off dead or we are better off without them.
``Sadly, that is exactly the message that has been communicated by this recent
decision and the laws and medical practices behind it.' '
Archbishop Hart said the Catholic community was ashamed at the legal and medical
climate which had allowed the death to go unchallenged.
Right to Life president Margaret Tighe said the ruling was disappointing, but
she realised the coroner's hands were tied.
Urging a police investigation, she said: ``I think it has to go much further
than the coroner, and what is the Government going to do about this?''
Catherine Davis, a member of the Pro-Choice Coalition, congratulated the
coroner.
``The law shouldn't dictate what women can or can't do regarding their
reproductive choices,'' she said.
``We believe it is a fetus, it isn't a child and a death hasn't occurred because
a birth hasn't occurred.''
Royal Women's Hospital clinical director of obstetrics and gynaecology Dr Jeremy
Oats said the decision added clarity to a difficult legal and medical area.
Since the abortion the hospital had implemented guidelines and a review process.
Three senior hospital staff were suspended then reinstated after an inquiry
found they had acted in good faith.
Ms Heffey would not comment on the issue.
A brave Wheelers Hill
teenager is kicking down the barriers connected with a restricting genetic
condition. SamLilly,
who suffers from achondroplasia a hereditary form of dwarfism, recently earned a
half black belt in tae kwon do. The 13-year-old keen
Essendon AFL supporter proved many sceptics wrong when she lined up with
able-bodied athletes at the Melbourne Taekwondo Centre in Glen Waverley to earn
the grading, after training in the martial art for four years. None were more proud of
Sam's
efforts than her father, Leon. ``She's a determined kid
and doesn't let anything about her condition get in her way,'' Mr. Lilly
said. ``There are many times
where it is tough for her, but she manages to win through.'' Mr. Lilly
also has a black belt in tae kwon do, after joining the martial art with his
daughter in 1998. ``It's been great for
her self-esteem after years of never being picked to be in normal sporting
teams,'' he said. ``Finally she's been
able to rise and succeed.'' There is no stopping
Sam.
The eager teenager is already in training to earn her full black belt next year. ``We're doing it
together, which helps when times get a little frustrating for her,'' Mr. Lilly
said. When Sam
is not practising tae kwon do, she is most likely practising violin or the
cornet on both of which she is an accomplished player. ``She's a tough kid and
it will get her places,'' Mr. Lilly
said.
OVER the past year, Sarah Rose's self-perception has changed dramatically.
As a person of short stature, 16-year-old Sarah has become used to people
looking at her.
But since she began competing in disabled swimming competitions last year,
Sarah, from Pymble, no longer considers being 125cm tall a disability.
``Some of my friends have been born able-bodied and gotten hit by cars,'' Sarah
said.
``Some of them can't talk that well and can't walk and mine's just because of my
size so I feel lucky.''
Before she took up swimming seriously, the Turramurra High School student had
little contact with disabled people.
She has made a lot of great new friends.
``No-one cares what disability you have got,'' she said.
``You compete against them and they're all supportive of you.''
In the last year, Sarah has broken five Australian records, 12 state records and
one open state record.
Breaststroke is her best stroke.
She will compete in the 2002 Telstra Australian Open Championships in Brisbane
tomorrow.
Sarah's aim is to compete for Australia at the 2004 Paralympic Games in Greece.
She decided to take up competitive swimming after going to see events at the
2002 Paralympic Games in Sydney.
When she went to visit the autograph stand Sarah was told she should think of
doing disabled sport.
``I got really pumped up,'' she said.
She now trains six times a week at West Pymble Swimming Pool and regulary
attends disabled swim camps.
``I fully love swimming now,'' she said.
``I wouldn't stop.''
Sarah set three new records at the NSW Disabled Swimming Championships last
November -- in the 15 years 50m and 100m breaststroke and 200m individual
medley.
She then set another record in December for the 50m butterfly before shaving
another six seconds off her 50m breaststroke record this year.
AT the age of five, Blooms Syndrome sufferer Corey Lawson weighs less than
his two-year-old sister, Amy. When fully grown he will be lucky to reach his
mother's shoulder. But the tiny Sunshine Coast boy has captured hearts in his
local community, which raised enough to send him to the US with his family to
see the only doctors in the world who specialise in the disease.
Corey's mother, Michelle said she and her husband Michael had been overwhelmed
by the generosity of people in the towns of Eumundi and Doonan, west of Noosa.
Ms. Lawson said a local businessman donated the $6500 needed to fly the whole
family to New York and a local club had raised enough to send the Lawsons to
Disneyland after all the tests were done.
And a further $5000 is expected to be raised in a charity auction at the
Imperial Hotel in Eumundi tonight.
"The four of us will go over to America to see the doctors over there and
hopefully they will be able to help us and help the doctors here look after
Corey." Ms. Lawson said.
She said the Eumundi Pool Club donated the Disneyland tickets as a treat for the
family.
"It's just to make the trip a bit special so it's not all medical. They've been
really generous."
She said the cost of care for Corey, including trips to the pediatrician,
ophthal, physiotherapist and speech therapist, meant that without the support of
the community the trip to America would have been impossible.
"There's only 250 people in the world who have it, so it will give a baseline
for Corey for the doctors here to know what to work on." she said.
"There's no one here that knows about it, it's so rare."
The short stature syndrome causes delayed grow and a variety of other symptoms
including a weak immune system and a higher risk of leukemia in childhood and
other cancers later in life.
Lil' mighty Margaret.
Melbourne Herald-Sun (Victoria, Australia), 11 October 2002, p. 31.
AT school, her peers called Margaret Doueal the Dynamo Midget.
And yesterday, at the 2002 World Masters Games, the 147cm squash player proved
she still deserved the nickname.
Doueal, 68, helped win gold for her team in the 65-plus age category.
Doueal has won 12 state titles and 11 national titles for her age group and has
beaten competitors in their 20s and 30s.
``I hold my own,'' she said. ``I can run. I can still drop-kick a football.''
Doueal, from McCrae, on the Mornington Peninsula, only took up squash when she
was 40, after giving up sport when she relinquished cricket at age 21.
``Women didn't really play sport,'' she said. ``We were a bit of a freak when we
were playing cricket.''
Doueal's secret to keeping fit is simple. She loves to walk, she loves her
vegetables and she doesn't smoke and doesn't drink.
``This lady used to get off the bus, go to a hotel all day,'' she said.
``Her husband used to come from work and make sure she got on the bus and he
said to me once, `I introduced her to alcohol'. That turned me right off because
he had to come everyday to make sure she got home OK.'
Does a beloved
fairytale make a stereotype acceptable? Chris Johnston reports.
Nathan Monk is 20. He is a dwarf. To be polite, or to be politically correct, he
is a little person. A person of short stature. To be medical, he is a sufferer
of achondroplasia.
Until very recently, Monk worked in an office doing a clerical traineeship. But
now he has embarked on a bold new career as an actor. And he found it very easy
to land his first big job - as one of Snow White's seven dwarfs.
Monk had bit parts as a Christmas elf and also appeared in Willy Wonka and the
Chocolate Factory in Sydney, where he lives. Now he is touring Australia's major
cities in Snow White and the Seven Dwarfs.
He accepts the strange position he is in: that, were he not a dwarf, he wouldn't
have got the job. He also accepts that, were he not a dwarf, he may not have
been able to become an actor at all.
He says that he is merely taking full advantage of his height: that he is
exploiting it, in effect, to get whatever stage-and-screen work comes his way.
"I have friends who are short statured," he says, "who have worked overseas,
doing TV ads in Asia. Some have done a Pokemon show in the United Arab Emirates.
Take the opportunity, that's what I thought. I'll see where it takes me."
His father, Trevor Monk, was also one of Snow White's dwarfs in a pantomime
production from 1968 until 1970. He, too, toured Australia and overseas as an
actor, performing in Melbourne at the same venue as his son, 32 years earlier -
The Comedy Theatre on Exhibition Street.
On the current tour, the seven dwarfs stay behind after the shows to meet
audience members, particularly children, who are perennially enamoured with
dwarfs - the "little people". Nathan says some parents even have autographed
photographs of his father as dwarf Sleepy.
"My father never really talked about what he did," says Monk. "All this stuff
I'm still learning about him. I tell him stories from this tour and he'll say,
'Oh yes, that's how it was in my day as well'."
Monk says because he has high self-esteem and has conquered the personal issues
to do with his dwarfism, he has no trouble earning a living in a way that would
be seen by some as dangerously hackneyed.
"I'm happy with myself and I got a job because I am a dwarf, so I did it. I
don't have anything against it. I'm the one making a fool of myself on stage. No
one is making a fool of me."
Despite this view, some "people of average height" may still cringe or feel
discomfort at the spectacle. Are the people who have the most to gain from
breaking down a stereotype helping to maintain it, albeit in the most innocent
way - entertaining children?
Is it positive for short-statured people, or is it detrimental? Or is it just
harmless Christmas fun? The seven dwarfs, after all, represent goodness, as Snow
White's helpers.
Meredith Young, the national secretary of Short Statured People of Australia
(SSPA), argues that it is harmful. She says short-statured people are not
"fairytale dwarfs". They function in the real world.
Some are actors playing in pantomime, but others are "accountants, business
analysts, teachers, laboratory technicians, gardeners, electricians,
librar-ians, childcare workers and the list goes on".
She says "`short-statured individuals" are often "poorly misrepresented".
In this age of political correctness, it seems wrong to even call a dwarf a
dwarf - unless you happen to be one and the word doesn't trouble you; or unless
Snow White is on again in the city.
Scott Smith, 42, has appeared in seasonal productions of Snow White and the
Seven Dwarfs, as a dwarf, for 26 years. He is, it could be said, having also
done movies and television, a professional dwarf. In the current Melbourne
production of Snow White he plays the dwarfs' leader.
"You've got to earn a living on what you have to offer," he says. "I'm not
six-foot-four so I can't play basketball. But look at Nathan. He's four-foot-two
(127 centimetres) and he can act so he might as well be one of the seven dwarfs.
Everyone has a talent. It's a matter of knowing what that talent is and being
happy making a living from it."
Smith grew up in the tough surrounds of Broken Hill and started performing as a
teenager at boarding school in Adelaide.
"I joined a drama group and we wrote comedy sketches around me because of my
height, to get laughs. I never had a problem with that. I was quite happy when I
found I could entertain people by having a dig at myself. It's better for people
to laugh with me than laugh at me. I realised that fairly early on. It's like a
form of self protection. Come out with all the one-liners before anyone else."
By the time he was 17, Smith had joined a big theatre company and was playing a
dwarf in Snow White, touring Australia for months at a time. He settled in
Sydney.
"That seemed to be where all the action was. I ended up living in a house in
Kings Cross with a couple of other dwarfs."
He worked in a shoe factory between shows, but then decided to pursue showbiz
full-time.
He has since appeared with Mel Gibson in The Year of Living Dangerously and
shared a stage with Geoffrey Rush in Adelaide. He has toured as one of Snow
White's dwarfs most summers since 1977.
Smith's main income, however, has come from television commercials, which pay
well, but are often, for a dwarf, "costume work".
"I have been a Paddle Pop, a rubbish bin, a handbag, a shoe, a can of tomato
soup. Or you put a furry costume on. It's not real acting, or not as I would
class acting, anyway. You just have to bounce around and wave your arms up and
down."
Smith says that, in his long career as an actor, there have never been any roles
that he considered dubious, or demeaning to him as a short-statured person, or
insulting to little people in general or even in bad taste.
Almost 20 years ago, a role seemed bad on paper and he wasn't going to to take
the job, but he did.
In the end, it worked out fine and turned out to be a positive experience.
"The American All-Star basketball team," he says, "who were like the Harlem
Globe Trotters, toured around the country towns. This was when basketball was
just taking off in Australia. They wanted to make it light-hearted so they
wanted to employ a dwarf to go round with them and do sketches during the games.
"At first, I thought they would just make a clown out of me," he says. "But it
actually became all right because, in the sketches, I, as the little person,
became the smart one and they, the tall people, were the idiots. So I got the
last laugh."
Snow White and the Seven Dwarfs is on at the Comedy Theatre, Melbourne, until
January 25.
A dream comes true
Cranbourne Sun (Victoria, Australia), 22 September 2004.
Cranbourne teenager
Sarah Whitaker is a firm believer that dreams can come true. The 17-year-old has
been granted her greatest wish a trip to Disneyland. Sarah and her
family will spend a week at Disneyland next month thanks to the Make A Wish
Foundation.
"I just can't wait
until we're over there," an excited Sarah said.
"It really is a
dream come true." Sarah and her
sister Chloe, 14, suffer from a rare form of
dwarfism
that causes spinal curvature. Doctors have told
the girls' parents Leisa and Jim that no one else in Australia suffers from the
condition. "The girls have two
forms of
dwarfism
which causes significant mobility problems," Mrs Whitaker said. "They haven't had
the opportunity to do things others girls their age do." The Whitakers'
other children, Tim, 13, and Georgia, 8, have no complications related to their
dwarfism. Chloe has already
received a wish from the foundation. The budding
photographer and cinematographer was given a digital video camera, which she
plans to test in Disneyland. But the Whitakers
are losing hope their greatest wish of all will be granted a new van fitted with
a hydraulic-lifting device for Sarah and Chloe's wheelchairs. "At the moment we
only have a sedan and can't fit the wheelchairs and the kids in it," Mrs
Whitaker said. "The girls have to
leave their chairs at school, which restricts their mobility when they're at
home.
"They can walk
about 50 to 100 metres before they have to stop and rest, which makes it hard
for them to get out and about like other teenagers." Already burdened
with the cost of electric wheelchairs, the Whitakers can't afford to buy a van,
let alone pay for the extras such as a hydraulic lift and special foot pedals
needed to accommodate Leisa and Jim's size. "We've priced vans
and we'd be looking at over $100,000 for what we need," Mr Whitaker said.
Yes, Snow White, there
are seven dwarfs
The Mercury (Tasmania, Australia), 28 September 2004.
PARALYMPIC dwarf Julie Iles and six of her little
people friends went to a themed restaurant in Athens and were served by someone
dressed as Snow White.Iles saw the humour in the situation, the waitress didn't.
"We made it into a joke: `Hello Snow White, I'm
Bashful, she's Happy'; do you want to kiss the prince?'," Iles said. "She was
just shattered, she just wanted to get us to the table as quickly as possible
and get us out. "It
was just a joke, a coincidence." Iles,
based in Sydney, is competing in the first shot put, javelin and discus events
at the Paralympics specifically for
people with dwarfism
-- or little people, as some prefer to be known. Iles is one of just
three athletes with dwarfism
on the Australian team -- the others are swimmers.
She is hoping to recruit more Australians with dwarfism
to elite sport ahead of the Dwarf World Games in Paris next year.
Shenee Sopp is just like any other six-year-old.
She started at Kincumber Primary School this year and loves it.
She asks a lot of questions, is cheeky and likes to play with her friends and
older brothers.
The difference is she will never grow taller than 1.2m because Shenee has
achondroplasia
or dwarfism.
As a result, she has had a few problems getting around and can't play a lot of
sports or jump.
"We had to go on
a school excursion
recently and I pushed her around in a pram so she didn't tire as much, but
people were staring at her which is hard", said her mother Michelle Sopp of
Kincumber.
Shenee's occupational therapist suggested using a
wheelchair instead of the pram, which was a source of teasing because of its
association with babies.
"Kids think a pram goes with a baby, but it's because her legs are so little.
She has to take two steps for our one and she gets really tired," she said.
The only problem is a year-long waiting list at Gosford Hospital for the 37cm,
purple wheelchair that Sheree wants. But with the help
of the community and Narara Valley Lions Club's mini-trains fundraising day, the
wheelchair might just be within reach.
TRY
pitting a 1.4m basketballer against a 1.7m opponent. It is made even harder when the age
difference between the players is 28 years.
But imagine if the 1.4m player is 41, and it is the
13-year-old who has the height advantage.
This is the challenge faced by the Sspitfires
basketballers.
Captain Meredith Young, 26, said the team filled a
void in opportunities in Victoria for short-statured
athletes.
The Sspitfires are bottom of the 16-team ladder in
the Port Philip Junior League.
They play in the under-14 division every Saturday at
the Melbourne Sports and Aquatic Centre.
It is tough scoring against the taller teen boys
when your lankiest player, Francis Kelly, is 1.4m.
The shortest player, at 1.1m, is 13-year-old recruit
Mike Spain.
"The under-14 boys tower over us," Ms Young said.
"We get one go at shooting and they pretty much get
the rebound every time.
"It has been great for public awareness for them to
play with someone with a difference.
"At the start people were a little gentle, and we
didn't want that.
"We wanted fierce competition, because we don't ease
up at all."
The 14-member team -- aged 13 to 41 -- has been
playing in the PPJL for the past four years.
The squad was established 14 years ago.
MIKE Spain left football on a premiership high.
The 13-year-old, who has a form of dwarfism,
announced his retirement after helping the St Pauls
McKinnon Under 13 West team to an MSJFL flag last
Sunday week.
Described by his father Peter as ``a bit of a
goer'', Mike played with St Pauls for three years.
But he recently decided he was starting to struggle
with the pace of the game and the height of his
opponents. ``They were just getting too big
for him,'' Peter Spain said. Before the final the St
James College student said to coach John Gates:
``This is going to be my last game.'' Gates told his
players to send their 110cm teammate out a
winner.
St Pauls had a dazzling finals series. They
qualified fourth and hadn't beaten any of the other
finalists but they thrashed Caulfield in the first
semi, were too good for St Kilda City in the
preliminary final and knocked over the unbeaten
Bentleigh in the decider.
But as one sporting door closes for Mike another
opens. He has joined the Short Statured People
Association's basketball team, the SS Spitfires.
FIERCE competition from the UK, a knee injury and
the pressure of defending a world title are not
getting the better of paralympic gold medallist
Sarah Bowen.
Sarah Bowen, 21, from Ocean Grove, said this week
she was planning to increase her workload at the
national championships in Melbourne in January.
``At the national championships I'm thinking of
taking on a new event, the 200m IM (individual
medley),'' Bowen said.
Her determination is no surprise. Bowen was born
with achondroplasia, a form of short stature, but
would not be deterred from chasing her sporting
dreams. She holds a swag of world records, and in
Athens last year she set a new paralympic record in
winning gold in the 100m breaststroke.
The combination of Bowen and her coach Lucky
Weerakkody, who has been with her since the start of
last year, has been a productive one and played a
significant part in the decision to take on a new
event.
``I sat down with Lucky and we sort of said, well,
I'm the world record-holder in the 50m breaststroke,
I'm the world record-holder in the 50m backstroke,
I've got a good technique for my butterfly and my
freestyle's moving along, so it'd be something worth
looking at in the future,'' she said.
``I'll probably do it at a few local meets and then
at the nationals. That'd be the first major
one.''
Having recently recovered from a minor knee injury,
Bowen is realistic about her commitment to the IM
and will only compete if it fits in with her
breaststroke and backstroke races.
In the event that there is a clash and she can't
enter the 200m IM, Bowen says she is confident she
will benefit from the experience, anyway -- and her
coach agrees.
``He thinks that it's really good news. He thinks
I've got a fair chance to be right up there,'' Bowen
said.
``It's also going to provide me with more endurance
for my 100 breaststroke.''
With records to defend, Bowen is a natural target
for her competitors. She is keeping her eye on one
in particular.
``There's a girl coming up in the UK, Elizabeth
Johnson. She was second in Athens, but she's moving
up pretty fast,'' Bowen said.
While she has no illusions about the level of
competition, Bowen also knows how hard she needs to
push herself.
``I'm training five pool sessions a week and then
two gym sessions and I'm doing about 20 minutes of
core stuff at home about three to four times a
week,'' Bowen said.
The schedule will hold her in good stead for a
hectic 2006. After national and state championships
in Melbourne, she will defend her world record at
the world championships in Durban, South Africa, in
November.
Ten-year-old Jarrod Wells, who has dwarfism, is in constant
pain from a degenerative spinal condition in which bone spurs in his back grow
into sensitive nerve tissue - and his symptoms are getting worse. But that has
not helped him get a specialist appointment any quicker at Princess Margaret
Hospital.
Jarrod is losing feeling in his legs as the bone spurs grow and restrict blood
flow, to the point he did not notice one of his toes had recently become so
infected it turned green.
His mother, Jenelle, wrote to Health Minister Jim McGinty yesterday backing PMH
doctor Gary Geelhoed's claims that the hospital was in trouble. She said
children like Jarrod had to wait months to see spinal specialists and weeks to
get MRI scans.
"Jarrod was seen in April this year and originally booked in to see a spinal
specialist in September, a five-month wait for an appointment in the
ortho-spinal unit," Mrs Wells said. She said they missed the September
appointment after PMH did not register a change of address.
They were told they needed another formal referral even though another
specialist had said Jarrod needed an urgent review, Mrs Wells said. "So we have
now been told he will have to wait until mid-February ... which is
unacceptable," she said.
The MRI department yesterday still had not received a referral for Jarrod signed
on October 10.
Mrs Wells is considering asking for a private referral.
"We can afford to pay for someone to see my son but there are thousands of
parents who can't," she said.
LACHLAN Felsch starts school tomorrow with a new spring in his step.
Less than a year ago Lachlan had major surgery on his legs which left him in a
wheelchair with heavy metal frames on both legs that had to be adjusted four
times a day.
Born with dwarfism, Lachlan's legs were bowed so badly he was almost unable to
walk.
Ironically, the day he had surgery last March was the first day Lachlan's legs
hurt too much to walk. At the time Lachlan said: "They're going to fix my legs
up and my legs will be so fast you won't be able to stop me."
Fast-forward almost 12 months and you can't keep the gutsy six-year-old still.
Lachlan bounced back quickly from the surgery and can't wait to start prep at
Ruskin Park Primary School in Mooroolbark tomorrow.
The keen cricketer is looking forward to joining big sister Stephanie, who is
starting grade two.
Lachlan could have started last year, but with the surgery and rehabilitation on
the horizon parents Darlene and Richard decided another year at kinder was in
order. "It's going to be fun," he said.
After everything they have been through in the past year, Lachlan's parents are
excited for their son. "It will be really good," Mr Felsch said.
During the four-hour surgery, orthopedic surgeon Leo Donnan broke Lachlan's shin
bones and drilled diamond-tipped metal pins through the bones, which attached to
an external frame that was adjusted four times a day to gently realign the
bones.
The frames and pins were in place for about three months, and Lachlan spent a
further three weeks in plaster.
Mrs Felsch said she had been dreading the operation and recovery but Lachlan's
awesome can-do attitude and cheeky disposition made it easier.
Lachlan has since asked his parents why they decided to let doctors operate on
his legs.
After they explained that he would not have been able to walk, run or climb and
would have been in a wheelchair, he thanked them for the decision.
"After he had it done he said: `Thank you for getting my legs done, I'm so glad
I got my legs done'," Mrs Felsch said.
Twenty-six-year-old Perth woman Claire Marshall could
literally be one in a million - born with a rare syndrome linked to dwarfism
which has doctors baffled about how to help her.
Neither she nor specialists at Sir Charles Gairdner Hospital treating her know
of anyone else in Perth with the genetic condition Russell-Silver syndrome,
which causes short stature and organs and limbs to grow at abnormal rates.
It was named after two American doctors who diagnosed it for the first time in
the 1950s after noticing several children who were small for their age and had
immature bone development.
There is no known cause and most cases are thought to be prompted by random new
genetic mutations rather than inherited.
In Ms Marshall's case, there was no family history and her parents tested
negative to the trait.
But the syndrome has caused a skull deformity which creates enormous pressure
and blinding headaches that even surgery cannot help.
She cannot drive because of epileptic fits and cannot have children because she
had to be sterilised when internal organs and her pelvis grew abnormally.
Now Ms Marshall is trying to learn more about Russell-Silver syndrome and hopes
to find someone with a relative or friend who can help her, but has so far found
no one in WA who can shed more light on the debilitating condition.
SCGH neurologists have tried surgery and drugs to relieve her chronic headaches,
which are caused by the odd shape of her skull, but so far they have achieved
minimal benefit.
Ms Marshall, who is 1.47m, or 4ft 10in, tall, lives on her own with support from
her family, including a sister and three brothers, none of whom has the
syndrome. But sh~e feels alone in battling her condition.
"The problem is that I don't know if the headaches are a normal part of
Russell-Silver syndrome. I have them 24/7 and they're like really bad muscle
spasms," she said.
"It makes it hard when even the doctors don't know a lot about this syndrome
because it's so rare and they haven't seen it before.
"If I could find out a bit more about it, then it would make it easier to
handle."
School will be made much easier for Bethany Wells with a new
laptop computer thanks to a Starlight Foundation wish.
The 12-year-old from Crestmead was born with achondroplasia, also known as short
stature, and has been in and out of hospital receiving treatment for various
medical conditions. Due to her condition she finds it difficult to write
quickly, but with a laptop computer she will have no trouble keeping up with her
classmates at school.
Bethany's wish was funded by money raised through Heritage Building Society's
branch network in support of the Starlight Foundation.
The Starlight Foundation has been brightening the lives of seriously ill and
hospitalised children and their families since 1988.
Bethany's mother Ruth said her daughter was very excited about receiving her new
laptop and printer.
JANICE SHIPLEY is a 49-year-old mother of two adult offspring, a grandmother,
and an "adopted" mother to several other young people, all members of a
community basketball team that she helps to organise. She works full-time for a
kitchen-supply shop.
Sometimes, to her extreme annoyance, strangers pat her on the head.
Janice is one of about 300 members of the Short Statured People's Association (SSPA):
she prefers the original 1968 name, the Little People's Association. "I think
SSPA is just too long. Little People, that's what we are."
She is the central figure in Short Stories, a documentary spanning four years in
the lives of a group of young, short-statured people.
First-time filmmaker Matthew Duffy, 38, who is of average height, came across
the SSPA Basketball Association in Port Macquarie in 1990. While hitch-hiking
around Australia, he stayed with a relative who owned a basketball court where
the first interstate SSPBA competition was being held, and hitched a ride back
to Sydney "in a car full of short-statured people".
A decade later, Duffy and his childhood friend Stu McCarney decided to document
the NSW team's campaign for the national title. But the pregnancy of key player
Amanda took the project in an unexpected direction.
"We'd always thought about basketball being a vehicle to tell individual
characters' stories but very quickly, our story evolved from being about short-statured
basketballers into quite personal stories, and all of those individual stories
came out of the same community. It's quite astounding how rich their lives are."
The irony of short people choosing basketball for a team sport, shooting for
hoops of Olympic standard height, is not lost on Duffy.
"It's incredible - that's what initially got our interest. Out of all the games
they could have chosen as a recreational sport, they've chosen a game that
really benefits someone with height, so you go, well, that's kinda interesting!
And some of them are really bloody good players."
While Duffy aims to portray "universal experiences", he says his subjects'
circumstances are informed by their physicality.
There's Amanda, the 24-year-old brunette, her short-statured partner, Alan, and
their problematic quest for parenthood. A "double dose" of dwarfism can result
in a baby unable to survive past birth, as happened with Amanda's first baby
with another partner.
Rosa is pregnant to her black American internet husband Winkie who, because of
financial and health troubles, cannot move to Sydney. Bubbly young Ammie, whom
Duffy accurately describes as having "a turn of phrase that is so Australian and
so politically incorrect", is off to Singapore by herself to perform in a suit
as Baby Bop in a travelling Barney show. And Nathan has, along with his
average-height brother Brendan, recently lost both his short-statured parents.
Janice's story is just as extraordinary. Growing up with average-statured
parents whom she says she "cost a fortune" as she flipped from one impossible
sporting obsession to another - "Anything I wanted to do, they let me try" - she
felt "alone on this earth".
A teacher introduced her to the Little People's Association when she was 16, but
she found the experience very uncomfortable.
"In those days it was Us and Them. They were little people, and they just liked
little people, and I thought, no. Because I was going out with Fred (who is of
average height), I thought, no, it wasn't for me."
Janice remembers her daughter Amanda's similar reaction to being invited to join
the basketball team.
"She said to me, 'Mum, they're little people', and I went, 'Yeah, what are you?'
And she went, 'Oh'."
As part of her association with the SSPA, Janice counsels average-height women
who have short-statured babies.
"We just want to make people not afraid of it. It is a shock to average-height
parents, having a dwarf baby, it would be, but it's not the end of the world,
there are a lot of people out there who are worse off than us."
Short Stories begins Wednesday at 9pm on SBS..
THEY are an average
family ... except for their height. Paul and Leza Daniels and their children
Meghan and Max are carriers of the genes that cause what was once called
"dwarfism".
The couple pose a deadly genetic combination: each carries a dominant gene that
means their children have a one-in-four risk of getting a fatal double dose.
In her first pregnancy, Mrs Daniels had prenatal testing at 11 weeks. They got
relatively good news: their baby would be born with her father's condition,
achondroplasia, the most common form of short stature.
"We always said we'd go ahead with the pregnancy as long as there was no
fatality with the double dose," Mrs Daniels said.
Meghan is now a happy four-year-old, and Max a healthy baby. But between the two
births there was much anguish as, with a second and third pregnancy, each unborn
baby had the double dose and the pregnancies had to be terminated as there was
no hope of the babies living.
It could have been worse, the Daniels say. They had the advantage of early
warning of the genetic bone disorder, thanks to the discovery of a gene by
Associate Professor Ravi Savarirayan.
"By having the knowledge, we didn't have to go through having stillborns," Mrs
Daniels said. "We grieved earlier, but we were fortunate enough to have Meghan
to make that grieving process easier."
The availability of such technology and information was amazing, Mrs Daniels
said. "We could not ask for any more."
WHEELERS Hill
teenager Samantha Lilly hopes to swim all the way to the London 2012 Paralympic
Games.
The 18-year-old does not let a hereditary form of dwarfism achondroplasia get in
the way of her sporting aspirations and as well as swimming competitively has
gained a black belt second dan in tae kwon do.
She said she had switched her focus from tae kwon do to swimming after being
encouraged by the Victorian Institute of Sport.
Lilly said she had toned down her training schedule this year to focus on
studying Year 12 at Mt Waverley's Huntingtower School as she hoped to study
physiotherapy next year.
The determined teenager trains regularly with the Nunawading Swimming Club
including early-morning sessions that mean a 4.30am start to the day.
"I'm loving it at the moment and will give it a red-hot go," she said.
Lilly said one of her favourite events was the 50m butterfly but she was a more
natural long distance swimmer and also enjoyed the 400m freestyle.
She competed at the state swimming championships in January and will compete in
the Victorian short course championships in Melbourne in July.
Lilly will also travel to Tasmania in August to compete with the Victorian team
at a school games competition.
Her Paralympic dream was recently given a push along with a $500 grant through
the Telstra Developing Athletes Grant Scheme, which she said had helped her buy
equipment and swimming uniforms.
RUNNING like the
wind was a good way for Lauren Naughton to cope with her two-year-old daughter
Emily's brittle-bone condition.
For Akiko Peen, coming to terms with her three-year-old son Julian's
achondroplasia (dwarfism, a term no longer used) spurred her to help the
Westmead Children's Hospital clinic treating him.
Both women were drawn to using their talents to help ConnecTeD, the fundraising
arm of the hospital's connective tissue clinic, headed by Professor David
Sillence.
Ms Naughton, of Kellyville, will run in ConnecTeD's half-marathon on Sunday
while Ms Peen is helping with publicity.
When these two women, who had not previously known each other, were faced with
raising children with disabilities, they each decided to act positively.
The common thread drawing them together was having children who were the first
in their families to be born with the debilitating hereditary conditions, but
despite Julian and Emily being dealt bad hands in the gene card-deck, they still
live relatively happy lives.
This is thanks to the hospital's care and their families' positive attitudes.
Ms Naughton said she took up running 18 months ago to lose weight and "to cope
better" with the constant care of her little girl.
Emily has already has suffered more than four serious bone fractures in her
short life.
Prof Sillence said both children were being helped by a new treatment called
pamidronate which reduces the risk of fractures.
"The treatment has really helped Emily and she is having less fractures," Ms
Naughton said.
For information on ConnecTed or to make donations, call the Medical Genetics
Clinic at the hospital on 9845 3215.
THE daunting
prospect of major surgery turned into an adventure for little Leo Lagana when a
limousine arrived to whisk him off to a Sydney hospital yesterday.
His stylish travel arrangements came after a nerve-racking day for his parents,
John and Pauline, who were told at 9am that surgery had been cancelled only to
have it rescheduled several hours later.
A critical shortage of acute beds at Sydney Children's Hospital had twice forced
the cancellation of delicate surgery in the past three weeks that hopefully will
stop a rare neurological disease causing Leo a fatal stroke.
On the last occasion - July 16 - the Lagana family's anguish increased when
their car broke down on the way home and left them stranded for about six hours.
This time around, the KidzWish Foundation, of which Leo is the chief ambassador,
and Leisure Coast Limousines, made sure transport was not a problem.
"It's been a pretty hectic day, but Leo was really excited about travelling in a
limousine," Pauline Lagana said. "I am still not sure what the situation with
hospital beds is, but we are keeping our fingers crossed."
Late yesterday afternoon a South East Sydney Illawarra Health Service
spokesperson said a bed had been found for Leo and that surgery would go ahead
as scheduled this morning.
"As far as we are concerned everything is ready with only a time for the surgery
to be confirmed," the spokesperson said.
Dubbed Leo the lionheart, the youngster who was diagnosed with primordial
dwarfism - a condition which dramatically stunts growth - will be in intensive
care for his seventh birthday on Thursday.
Earlier this year he received a further setback when diagnosed with Moyamoya
disease, a blockage of the arteries in the brain.
Moyamoya is a Japanese word for "puff of smoke" and describes the look of the
tangle of very tiny blood vessels formed to compensate for the blockage.
Without surgery Leo is highly likely to suffer a massive stroke.
Short stature
hasn't slowed this family, writes CHERYL CRITCHLEY.
Leisa Whitaker, 40, has the most common form of dwarfism, achondroplasia.
Husband James, 42, has pseudoachondroplasia. Son Tim, 16, has Leisa's form,
daughter Georgia, 11, has James's and Sarah, 20, and Chloe, 17, have a
combination of both. Leisa is 117cm and James 118cm.
James, your family are all short-statured?
James: Yes, I have two brothers and two sisters.
Leisa has no relatives with dwarfism.
How did her parents handle it?
Leisa: They were fantastic. I'm the eldest of seven. I was just expected to grow
up the same way. The same expectations were put on me.
James grew up in the limelight when his parents set up Short Statured People of
Australia?
James: My parents founded it in 1968.
How did you meet?
James: Through the Short Statured Association at a teenage camp. About five
years later we got together.
Was it physically hard to have children?
Leisa: The pregnancies were really, really good. I actually asked the doctor is
there any difference for you treating me and he said no, just your head's a bit
closer to your feet. And that was all. I got big really quick and I had
caesareans for all of them.
There are more than 200 forms of dwarfism.
How are yours different?
James: I have more loose joints.
Is that why Georgia just had an operation?
Leisa: It's an alignment of her whole leg. They actually realign the bones in
her legs to save the joints. When she gets to Jim's age her joints will be a lot
more protected.
Is your house modified?
Leisa: We're in public housing. They lowered the kitchen. We have wider hallways
to cater for wheelchairs (when needed). We have a bathroom that has a walk-in
shower.
Do you both drive?
Leisa: We have extended pedals, the brake and the accelerator.
Do you have problems with community facilities?
Leisa: It would be nice if people would consider the heights of counters in
places like banks. If I'm at a shop and I'm waiting to pay something, I'll wave
a $20 note. They see the money before they see me.
Is the term dwarf offensive?
James: I can sympathise with a lot of (SSPA) members out there who don't like it
because there's a stigma attached, I think the whole sort of fantasy, Snow White
and the Seven Dwarfs thing. Generally, the word dwarf or dwarfism doesn't bother
me. It is in a sense a medical term.
Leisa: I've actually embraced the word. I tend to use it: ``I have dwarfism.''
That immediately puts a picture in your mind.
James: Probably the most politically correct one these days is short stature.
Leisa: I welcome questions. If a little kid comes up to me and says ``Why are
you little?'', I would rather a parent not go ``Shh, don't be rude'' because
they're just being a child and they just want to know. If I've educated a child
maybe I've educated their parents as well.
Leisa works part-time for Arts Access Victoria?
Leisa: I'm in administration with the EASE ticketing service. We provide
reduced-price tickets to arts events around Melbourne.
James: I'm a customer relations officer with a hearing centre. I deal with the
customers inbound and outbound as far as inquiries go.
What about the kids?
Leisa: Sarah's actually doing professional writing and editing (at TAFE). Chloe
is in year 10. Tim's in year 9 and Georgia's in year 5.
What do you want to do when you grow up Georgia?
Georgia: I want to be an artist. Painting and making jewellery.
Do you play sport?
Georgia: At school I do. Soccer. It's a girls and boys team.
Leisa: She used to go to dancing and she did classical and tap. When I was six I
did some classical ballet and just loved it.
James: I played some competition soccer for a while when I was a kid. Golf and
table tennis I've done as an adult. I try to play the occasional game of pool
when I can.
How did you feel when a Melbourne woman had a late-term abortion after
discovering the baby had dwarfism?
Leisa: I would love to have been able to support that woman somehow. I could
have shown her that her baby's life wasn't going to be what she thought it was
going to be. It also had the potential to live a full, happy, rewarding, active,
involved life. No judgment on her whatsoever.
James: I do worry that things like that could set a bit of a precedent as well.
That is a real concern of mine.
Is there help for people with a short-statured child?
James: There's a lot of good people in the SSPA who can give them advice, point
them in the right direction.
Visit
www.sspa.org.au
Margherita
Coppolino has learned the art of walking tall.
WHEN my mother
migrated to Australia from Sicily in 1959 she fell pregnant on the boat over
here, out of wedlock. When she arrived here, she signed the papers for me to be
adopted.
But in the '60s
if there was anything medically wrong with the child they couldn't be adopted,
so I was made a ward of the state.
The first 18
years of my life were spent under care in orphanages and all decisions were made
for me by the Victorian Government.
The age of eight
was really the time that I significantly remember children in the orphanage
saying to me: "You'll never grow up, Marg," and I kept denying it.
One day the nuns
organised for some short-statured people to visit me. You should have seen the
shock I went into - that's when I realised that I was different and I wasn't
going to get tall.
After that visit
I would sit in the church and ask God for forgiveness because it was a Catholic
orphanage and I thought God could cure everything. I asked God if I had been
naughty. I promised to be good, and not play up, because I was a bit of a rebel.
I tried to make bargains.
I realised after
a period of time that it wasn't going to change and God wasn't going to change
it.
My teens were
probably the most difficult era. I wondered if I was going to have a boyfriend,
would I have children, and how my height would affect my chances of getting
work. I'd have my good days and my bad days.
On bad days I
didn't want to get up and face the world, so I'd get myself in trouble so I
could stay in bed. I was very fortunate that there were people who looked after
me who forced me to do things and told me I needed to face up to my life.
They were great
mentors and taught me the more you hide from something, the more you're
confronted by it. You have to deal with it.
Once I got
through my teens and started to understand that there were other aspects of me
that were more important, and became a holistic person, the emphasis around
being short became less and less an issue.
It took a long
time to focus on the skills I had, rather than what I didn't have; that probably
took until my mid-20s. But once I started to do that, I realised that people
accepted me more. I actually don't think that my height has any impact on
anything I do now. I think other aspects of who I am have a greater impact.
I'm acutely
aware of it at times, like if I'm at a seminar or something where people are all
standing up and having drinks - that's when I'll be stretching up trying to
listen to somebody and they're trying to talk down to me, so what I'll do is ask
them to sit down or I'll stand on a chair so I can be eye-to-eye.
Sometimes when
I'm using public transport it can be very difficult. The built-environment
issues are what tend to remind me that I am short-statured.
In regards to
people's attitudes, I tend to worry less about that because I just turn it
around and think the better I behave, the better people will understand and
break down barriers so they can ask questions; I use that to my advantage most
of the time.
I have a real
sense of being OK about my physical height. I'm very comfortable in my skin. I
think (ther are) other aspects of who I am I struggle with every now and then,
because of the level of acceptance.
I was in a
relationship last year; it was with a woman but that's not something I have been
very open about, and that was a part of me that I probably struggled with more
than my disability, believe it or not.
The reason I was
not really "out" was because I worked in the corporate sector and I worried how
it would affect the work that I got.
I've never been
in a relationship with somebody short-statured and I can't answer the question
why. The relationships I've had with both men and women have been with people of
normal height.
I made the
decision at about 37 not to have a child. I got a cat and two goldfish and they
became my children.
About 10 years
ago I was invited to participate in a photo exhibition called Intimate
Encounters. It was put together by a Sydney photographer around people with a
disability in intimate positions. In my photo I'm completely naked.
It was the most
empowering experience; but not at the time! I was so scared. I remember before
the photo was taken, thinking: "I'd better shave my legs, or I better go to the
gym, I better look good".
Here I was
trying to make my body look different but then I decided that that was not what
the photo was about - the photo was about who I am.
I was so scared
because when you're nude, people can't judge you on the clothes you wear or the
jewellery you're wearing. They see you as you are. That was a very significant
catalyst for me to be more comfortable in my skin and with other aspects of who
I am.
I look back at
that time as a reminder to myself that I am OK, my body is OK. It was a very
empowering thing to do. -- INTERVIEW BY MICHELLE HAMER
MOST Tasmanians will make it through their life without requiring the services
of Tasmania Police's rescue helicopter.
But little Jack Moore has not been so fortunate -- the two-year-old has had
seven lifesaving chopper trips to hospital in the past 18 months, earning him
the title of ``No.1 Frequent Flyer'' from the chopper crews.
When Jack was born 16 weeks prematurely and weighing just 770g, his lungs were
so under-developed doctors gave him only a 50 per cent chance of survival.
At six months, he was diagnosed with apnoea -- a condition which causes him to
stop breathing -- and at 12 months he was diagnosed with achondroplasia, or
dwarfism, which means he won't grow at the rate of other children.
But with a fighting spirit and cheeky grin, Jack is growing stronger every day.
His struggle was yesterday recognised by Tasmania's police and ambulance
services, who presented Jack with a specially designed table and some new toys,
funded by the Tasmania Police Charity Trust.
The table will help Jack do all the things other kids his age take for granted,
such as sitting up to play with toys and eat dinner.
Jack's mum Ruth Bishop said the donations would be a great help to her family,
which had faced many struggles since Jack was born.
After having two normal pregnancies with her older daughters -- now aged 19 and
13 -- Ms Bishop was shocked when Jack arrived 16 weeks prematurely.
Jack finally went home after six months in hospital. But just a week later he
had his first episode of apnoea.
Fortunately Ms Bishop, a nurse, could resuscitate her son.
The bouts of apnoea continued and with the family living on Bruny Island the
helicopter and police boats were needed to get Jack to hospital at times when
the ferry was not operating.
It has been nine months since Jack's last ambulance trip and his apnoea seems to
have stopped, much to the delight of his mum -- and dad John Moore -- who say
their boy is getting stronger every day.
TWO local sporting clubs are $1000 better off after winning
Leader's Grassroots Gold Competition.
Aspendale Auskick was the winning junior club for the Mordialloc Chelsea Leader.
Aspendale Auskick grade 1 co-ordinator Denis O'Neill said $1000 worth of
equipment would be a boost to the 200 children who participate in the Saturday
morning clinics.
Mr O'Neill entered the competition with an unusual poem.
"Young children's boredom's my frustration, Aspendale Auskick is their
salvation, a fun-filled action-packed safe environment sensation, lack of
adequate footy gear and no funding total desperation, new sporting equipment
will be cause for total jubilation, thanks Rebel Sport, our ultimate one stop
Aspendale Auskick destination!"
The winning senior club was Sspitfires , a Short Statured People of Australia
Victorian basketball team.
Sspitfires captain Meredith Tripp said the group planned to put the money
towards competing at the World Dwarf Games in Ireland next year.
Mrs Tripp, of Bonbeach, said Sspitfires was seeking as much sponsorship as
possible to make sure the best possible team could compete in basketball,
athletics and swimming at the event.
The Grassroots Gold initiative is a funding partnership involving RACV Show Your
Card & Save, Rebel Sport and Leader Newspapers which injects more than $100,000
of equipment into needy senior and junior clubs across Melbourne.
Standing tall Sunday Herald-Sun (Victoria), 6 July 2008.
Model and entertainer Jeremy Hallam has not let
dwarfism stand in the way of a full life writes SHANNON DEERY.
HE may be small, but that has never stopped Jeremy Hallam from aiming high.
Mr Hallam's diminutive stature is something that has simply never worried him.
The 23-year-old's positive outlook and zest for life has enabled him to launch a
successful entertainment business while studying a double-major university
degree and working part time.
It's a steely determination to succeed and a strong belief that being born with
Achondroplasia - the most common form of dwarfism - should not stop him in his
quest for success.
"Being a dwarf means there are a few obstacles throughout life that I need to
face and overcome," he says.
"Being shorter than everyone else makes a slight difference in some
circumstances ... but I don't let it bother me.
"There is always a solution and I'll always find it."
While studying an arts degree at Deakin University Mr Hallam finds the time to
undertake a gruelling health and wellbeing regime including gym work and martial
arts.
"It has taught me self-discipline and confidence ... that I would be able to
defend myself so my determination to keep training is a top priority."
But it's in the entertainment industry that Mr Hallam is trying to forge a
career.
Starting out in 2005, the pint-sized entertainer has secured TV and event
appearances, and modelling work.
The budding entrepreneur has been so successful that he has launched his own
entertainment company, BigJem Entertainment, to keep up with the demand.
"I love getting behind, and in front of, the camera."
But he adds: "I wouldn't be the person I am today without the support of my
family and friends."
He insists his disability is no more than a hurdle he needs to overcome in his
quest for success.
"Everyone is dealt their cards in life and we choose how we play them.
"This is how I play mine."
Short stories Gold Coast Bulletin
(Queensland), 19 July 2008.
Maybe the best way to tell the story of little people is
to get the jokes over and done with at the start.
We'll keep it short. We'll do what most people do, which is
to present the put-downs first and think about the
ramifications later.
Chris Cruickshanks, a 137cm man from Chevron Island, offers
this: "If I ask for a coffee at work, they always say: Will
that be a short white or a short black?"
Lee Whichello, a 130cm resident of Nerang says: "At school I
did what a lot of kids did back in those days, which was to
have a smoke around the back of the toilets. See? It stunted
my growth."
And another one for Chris: "I appear in a lot of movies, but
I really only enjoy short roles."
It seems everyone has a short people gag, even the people
who are the targets.
Short-statured people, as they prefer to be known, use the
jokes not as a foil against the dumb remarks of
average-height people, but as a way of letting it be known
that if they're going to spend their lives looking up at
others, they want perceived attitudes to be on their terms.
In other words, they like to get in first.
Chris, the manager of the Blue Whale Car Wash at Ashmore,
uses his height as a lucrative sideline to his normal day
job. He's in big demand as a film actor and for other
entertainment jobs.
For example, on St Patrick's Day he dresses as a leprechaun
and goes about the bars and dining areas of Twin Towns
dispensing gold coin chocolates to patrons.
He's been doing that for 12 years.
"It pays well, but the best part is that it puts smiles on
the faces of everyone I meet. A lot of them want me to rub
them, like a true leprechaun, for good luck."
He has also played one of Snow White's dwarfs many times in
pantomimes.
And, occasionally, hires himself out as a miniature Mexican
waiter for parties, walking around wearing a sombrero that
has guacamole on top and corn chips around the brim for
party-goers to pick at.
"If it pays, why not? It doesn't worry me," says Chris.
Chris Cruickshanks
Chris Cruickshanks, a former Kiwi, is one of eight
children -- two boys and six girls -- born to Scottish
boilermaker John Cruickshanks and his wife Margaret in
Christchurch.
Like Lee, Chris was the only child in the family to be
affected by achondroplasia and credits his parents for
developing his healthy attitude about life.
"I thank them for what I am today; my dad taught me there is
no such word as 'can't'," he says.
At 64kg Chris is super-fit -- the result of his physical
work at the Ashmore car wash and four months of strenuous
gym work in readiness for his role in a coming action movie
(the details of which he'd rather not divulge).
He has been in plenty of other movies, including Scoobie
Doo, as an arm wrestler in Inspector Gadget,
as a poker player in George of the Jungle II and in
the new Chris Nyst Gold Coast movie Crooked Business.
Chris is someone who never gives up trying, just as his dad
taught him.
He once had his heart set on being a jockey but his legs
weren't long enough to reach the stirrups and he also wanted
to be a car mechanic but his arms weren't long enough to
reach deep into a vehicle's engine well.
On the Gold Coast, he once tried to join the snooker club at
the Southport RSL but his application was declined because
of the snooker rule that a player must always have one foot
touching the floor.
But that's about all that has really stumped him.
He has travelled around the world, is a manager in charge of
five employees, regularly plays squash and spends most
weekends knocking about with mates at barbecues and in the
clubs of Surfers Paradise.
He has no qualms about using his height to make money in the
entertainment industry.
Apart from his movie roles and Mexican waiter and leprechaun
routines, he once played Bashful, one of the dwarfs in an
Australian company's Snow White pantomime that
toured the North and South islands of New Zealand.
And before he moved to the Gold Coast in October, 1993, he
would occasionally play the clown at the Christchurch
speedway, throwing lollies to children in the crowd.
"I love making people happy," he says.
Chris has always been super-fit. He regularly works out at
the gym and this year, in readiness for his action film
role, has cut out beer.
"We have to keep fit because when we get older, our hips can
pack up unless we keep active," he says.
Unlike Lee, he can drive most vehicles without needing pedal
extensions.
"All I need is a cushion to sit on sometimes, and I can
drive everything from Ford F-350s to Nissan Pulsars."
He also plays squash against average-height mates: "Guess
who does all the running during a game?" asks Chris.
On the subject of running and childhood hardships, Chris
fondly remembers a time in New Zealand when he was a
schoolboy frustrated by the difficulty of cross-country
races.
"My teacher worked out that for every pace taken by an
average-height kid, I would have to take two because of the
length of my legs," he says.
"So he worked out a handicap system whereby I could start
somewhere along the track so I could have a fair chance of
realising my running potential. It worked, and I loved
running after that."
Chris has also learned to take the stares and comments of
average-height people in his stride.
"If I walk into a bar, everyone will turn and look at me,"
he says.
"But people are not judging, they're just curious. And they
might ask me things like: 'What's your life span?' So I tell
them 'the day I get hit by a truck, like anybody else I
suppose'."
Chris has a wide circle of mates, including larrikins who
have known him long enough to involve him in practical
jokes.
"I have trouble getting up on bar stools, so occasionally my
mates give me a lift, then scarper and leave me stranded
there or they push me into a corner on the stool and abandon
me," says Chris.
"They're mates. They can do that to me because they
understand me.
"There's not much I can't do without the help of milk crates
to stand on -- thank God for their invention -- and there
are no limits to my job or my leisure time.
"I've travelled around the world by myself, no problems.
I've been to visit my sister in San Antonio, Texas, had a
whale of a time, and now I'm planning to go to Las Vegas.
It's gonna be big."
Lee Whichello
Lee Whichello was born and bred at Burleigh Heads. His
father Richard, his mother Bonnie and his brothers Don and
Jeff are all average height.
He is keen to set the record straight about dwarfism and to
dispel any misconceptions about the condition.
"First up, there's a physical difference between us and
midgets -- midgets have smaller proportions all over but
while we have generally normal length trunks, our arms and
legs are proportionally shorter -- the result in most dwarfs
of achondroplasia," says Lee.
"And the other thing about us is we prefer to be called
short-statured people, although naturally we get 'little
people' and 'dwarfs'."
Lee, recently separated from his wife, has never allowed his
lack of height to stop him doing anything.
The 52kg pocket rocket plays golf with custom-made clubs at
Tally Valley, can hit the ball 180m on a good day and has a
handicap of 19.
In his schooldays -- at Burleigh Heads State School and
Miami High -- he had a go at every sport on offer and was
competitive in hockey and soccer. He played B-grade for the
Palm Beach All Stars and soccer for the Palm Beach under-10s
and 12s.
"I found primary school daunting, but life became better
when I went to high school," he says.
"Other kids teased me at primary school because they didn't
understand, but when I went to high school, teenagers seemed
to have broader minds and everything was cool.
"I've always tried to take life to the max, and older
students seemed to understand that."
After leaving school, his first job was at The Gold
Coast Bulletin as a copy boy and he subsequently
started a four-year printer's apprenticeship. By 1988 he was
a full-time compositor.
All up, he worked at the Bulletin for 20 years,
finally leaving as a result of technology changes in the
printing industry. He has since retrained as a clerk,
proficient at computers and administrative duties and is
looking for work.
"My only disability is height, the rest of me is the same as
everyone else," says Lee.
"My parents brought me up with an open mind. You can't live
in a shell. You have to get out there and do your best."
"The only concessions made by my mum and dad were giving me
a smaller bike when I was a child and altered clothes.
"It's actually handy buying shoes, because I get them (the
broader shoes) from the children's section in department
stores and they're a lot cheaper there.
"And nowadays, the only real physical necessity is to have
extensions on the clutch and brake pedals of my car, plus my
customised golf clubs, of course."
As a young man, he dated both short-statured and
average-size women.
"Of course, it's a lot easier to go out with short women,
but height really doesn't matter," he says with a smile.
"Prejudices against short-statured people don't really worry
me. If you let comments or people's looks get to you, you'd
be miserable.
"At work, my mates used to get my coffee cup, put it up on
the highest shelf, hide my stool, then stand back and watch.
Sounds cruel, but I didn't mind at all. It was all good
fun."
He says if he is in a supermarket and can't reach something,
other shoppers are happy to help out.
"Most people are fantastic," he says.
Lee is happy to use his height disadvantage to advantage. He
has been in two movie roles and a rock video, but draws the
line at performing in something as 'degrading' as the dwarf
throwing the Surfers Paradise nightclub game made popular in
the 1980s and '90s.
"I wouldn't begrudge other little people being used in a
contest like that, but it's not for me," says Lee.
He says his lack of height gives him an advantage on the
golf course.
"I'm lower to the ground, so when I'm on the putting greens
I can easily see which way the ball will break."
The Hobbs family
On the Sunshine Coast, at Bli Bli, David and Cathy Hobbs
typify short-statured people who, despite their vertical
limitations, are building a life without boundaries.
David and Cathy have dwarfism, but their daughter Jessica,
aged two-and-a-half, is destined for average height.
Jessica, a precocious and beautiful girl with blonde hair
and blue eyes, is already almost as tall as her mother's
shoulders and will be taller than her parents at age eight
or 10.
"She's a blessing," says Cathy.
"She completes our family and we just adore her."
David and Cathy have achondroplasia -- the most common form
of dwarfism caused by a genetic disorder -- and their
chances of having an average-height baby were only 25 per
cent.
As well, the Hobbs had to wait eight years for a successful
pregnancy to come to fruition.
"The odds for us are 25 per cent for an average-height baby,
50 per cent for short statured, and 25 per cent for double
the effect of the gene, which can be lethal," says Cathy.
"I had a really good pregnancy -- I was very healthy -- and
I has a caesarean section at Buderim Private Hospital three
weeks before term, which is normal for women with
achondroplasia.
"We knew 13 weeks after her birth that Jessica was going to
be average height."
David, a manager at the Tandy store at Kawana, was born in
Oklahoma, US, and was adopted at the age of two by his
short-statured mum Rosemary, of Melbourne.
"Mum heard about me through an adoption agency in Australia
in 1972, flew to America to adopt me, heard about another
little girl called Cathy in Connecticut -- a year younger
than me -- and also adopted her," says David.
"And later, she also adopted Emma, my youngest sister, from
South Australia.
"She also has a son, Jim, by Rosemary's first husband George
Whittacker who died when I was eight. Mum remarried, to
Stephen Hobbs, and that's the surname I have.
"The whole family is made up of short-statured people.'It
was Rosemary Hobbs who, in 1969, began the Short Statured
Association of Australia, a support group for anyone who is
born with any of the 170 forms of dwarfism.
David was brought up at Port Macquarie in NSW, educated at
the local St Joseph's Catholic School and worked as a
mechanic after leaving school. He knew Cathy at Port
Macquarie back then, but just as friends.
As an adult he moved to Currumbin, then to Maroochydore.
Cathy was born at Queanbeyan, the youngest of three girls.
Her sisters, Kerry and Jenny, and her mum and dad, Jane and
Brian Foy, all were of average height.
After leaving school, Cathy worked for a building society in
Canberra.
But 20 years ago she left her job to follow her family to
Noosa after her parents, sisters and their spouses moved
there to build an 'olden days' theme park called Nostalgia
Town.
She and David met up again, fell in love and moved in
together at a Maroochydore unit.
Eventually, David proposed the good old-fashioned way.
Not only did he ask Cathy's father permission to marry her,
he also secretly set up the top-floor unit in their
Maroochydore building with tall-stem roses, a bottle of red
wine, a CD player for mood music 'and a few nibblies' to set
the mood.
"I popped the question and she said 'yes', thank goodness,"
says David.
The arrival of Jessica naturally has changed their family
dynamic and given them a new perspective on life.
"People can be cruel, and sometimes they might come up to us
in a shopping centre and ask if Jessica is 'normal'," says
Cathy.
"Can you imagine how much that hurts? And sometimes parents
will point us out to their children and say: 'Hey kids, look
at the dwarfs'.
"But Jessica will be an extra-special person because she
will grow up with a perfect understanding of how we feel.
She will be able to cope with the prejudices."
David says they don't want special treatment, just
understanding.
"Look, we're just Dave and Cathy. Our only physical
difficulty is that we can't reach things."
The Hobbs express unease about the way some short-statured
people allow themselves to be 'dwarfs for hire'.
"It amounts to allowing society to put labels on us," says
Cathy.
"People say: 'Oh, that's what little people do for a
living', but we can do anything.
"Playing life as a dwarf degrades the work we constantly
have to do to prove ourselves."
OCEAN Grove swimmer Sarah
Bowen believes a shoulder injury won't hurt her chances of
defending her Paralympic crown.
Bowen, who won gold in the 100m breaststroke at the Athens
games, said the injury had not hindered her preparation for
the event.
But, she said it had plagued her preparation for the 100m
backstroke, which she will swim for the first time in the
Paralympics, starting in Beijing on September 7.
``I haven't done a lot of backstroke,'' Bowen said.
``I hurt my shoulder six weeks ago, so I've only started
swimming that again a week ago.''
Bowen, 24, captured her Athens gold in world record time and
believes she is in the same condition.
``They say that girls hit their peak at 24,'' she said.
``If I swim a good time and finish fourth, that's better
than not swimming a good time at all.''
Bowen will also compete in the 200m individual medley.
The Paralympic team departs for Malaysia on August 23 and
will head to Beijing a week later.
Bowen was born with achondroplasia dwarfism, but it hasn't
stopped her from living life.
She works part time at the City Living and Care Centre in
Drysdale and also has worked as a swim teacher. Bowen is
ranked number two in the world in her category and was the
number one ranked swimmer during the Athens games.
She started swimming nine years ago and quickly discovered
she had ability to perform at the highest level.
``I was at a swimming event one day and a coach saw me and
thought I had potential,'' she said.
Bowen broke world records in the 50m breaststroke and
backstroke in 2004.
Former Ocean Grove resident Daniel Bell is also competing at
the Paralympics.
Ark for ill children Daily Telegraph (New South Wales), 4 September 2008, p. 19.
NICOLE
and Goran Jordanov were shocked when doctors told them their
first child had dwarfism.
With no family history of the affliction, the couple was
dumbfounded that their son, Noah, was one in 10,000 babies
born each year with the connective tissue disorder.
While still coming to terms with the news, Mrs Jordanov of
Moorebank was then faced with another challenge.
One week after Noah was born the first-time mum developed a
life-threatening blood clot.
``That put things into perspective and made me accept Noah's
condition,'' Mrs Jordanov said.
``He is the light of our lives.''
Now two, Noah, is a healthy toddler but still unable to walk
or talk.
Now, through the help of a world class clinic in western
Sydney, he is being given the best start in life.
Dealing with 600 rare disorders including -- achondroplasia
(dwarfism), marfans or excessively tall stature and brittle
bones -- the connective tissue disorder clinic at the
Childrens Hospital, Westmead, is helping children lead a
healthy life.
Almost 30 years ago, when it was founded by Professor David
Sillence, disorders were going undiagnosed, putting people
at risk of death.
The clinic now sees about 700 patients each year.
``Before we instituted our programs almost three decades
ago, our work with some of the more severe disorders was
simply to be available to relieve the suffering of those
children as they died from respiratory failure,'' Professor
Sillence said.
``Today we don't expect any of these children will die. We
relieve their pain enormously and for all the different
disorders we look after we've made their quality of life so
much better.''
AN
invitation has been extended to people of short stature or
families with someone born with achondroplasia (dwarfism) to
attend this year's national convention at the Gold Coast.
Heather Knuth, wife of Member for Charters Towers Shane
Knuth, began a support group for parents with short statured
children after her son Daniel was born with the condition 11
years ago.
Mrs Knuth eventually found 22 families from Rockhampton to
Cairns who had an interest in being part of the group, and
subsequently organised the first ever convention for
Queensland in 2005.
"These conventions are important so people can get together
and have fun but also hear from experts about medical issues
faced by short people," she said.
The 41st national convention is scheduled to be held from
September 29 to October 5 at Mt Tamborine on the Gold Coast
and Mrs Knuth and her son Daniel wish to encourage families
to attend.
"The whole family benefits - he parents get valuable
information from each other about their personal
experiences, and the short person makes friends with others
in the same predicament, while siblings get to meet other
families going through the same things," Mrs Knuth said.
If you are interested in attending, call Mrs Knuth on 4787
2987.
Heather Knuth, with her son Daniel, is urging parents to
attend the upcoming national convention for short people.
OCEAN Grove
Paralympian Sarah Bowen has continued her medal-winning
streak following the Beijing Paralympics.
Bowen picked up a silver medal in the 100m breaststroke
disability final at the Australian Short Course
Championships in Melbourne on Tuesday.
The silver medal emulates her silver at the Beijing
Paralympics a fortnight ago.
Bowen said she was pleased with her swim after spending more
than a week out of the pool.
``It felt like a pretty good swim, so I was happy with it,''
Bowen said.
Bowen, who was born with achondroplasia dwarfism, returned
to her Ocean Grove home at the weekend, proudly showing off
her new silverware.
But she still knows how close she came to winning gold in
the 100m breaststroke.
Great Britain's Elizabeth Johnson beat the Ocean Grove
swimming star by just .52 seconds.
Officials estimated Bowen needed less than one metre more to
win gold.
Bowen said Johnson told her post race that she was surprised
by the close finish.
``She was just so shocked at how close a race it was,'' she
said.
Bowen was still able to take a positive from the games she
maintained her Paralympic record from Athens.
``I saw that and thought, that's good I've still got the
record, it's there for another four years,'' she said.
Bowen, 24, is now considering whether she will aim for the
London Paralympics in 2012.
She said her decision would be based on whether she had the
passion to compete at the highest level.
``If I've got the passion, I'll be there but four years is a
long way away,'' she said.
Bowen will take a break from the major competitions before
the state titles in January.
