The Faces of Courage

Sisters Samantha, left, and Jamie-Lee with their mum and dad and Bryan Vadas, right

Killer disease doesn't stop smiling sisters
by Melissa Townsend
 

Jamie-Lee Dwyer and her younger sister Sammy are
facing uncertain futures with courage, hope and
determination.

Several years ago the Runaway Bay sisters, aged 19
and 17, were diagnosed with Friedreich's Ataxia, a
debilitating disease for which there is no
treatment or cure which attacks the muscular
and nervous system and affects about one in
50,000 people.

Friedreich's ataxia is genetic and both parents have
to carry the gene for it to be passed on.

The girls had led normal, healthy lives until the
diagnosis at the ages 11 and 10.

Their parents, Mike and Mandy, said the news was
devastating.

"One in 100 have the gene but very few people know
about it," said Mr Dwyer.

"Its crippling and life shortening and when the girls
were diagnosed we were told there was basically
not much hope."

"Doctors said there would be a decreasing quality of
life with premature death - they said they would be
lucky to make 20."

Within three years, Jamie-Lee was in a
wheelchair, while her younger sister was
forced to use a walking frame

 

Despite their predicament, the girls and
their parents remain positive that a cure
will be found through ethical stem cell
research.

Eighteen months after the girls were
diagnosed, their parents set up a
national organisation -
The Friedreich's Ataxia Association -
with other families.  Each year it raises
up to $500,000 towards research in the
hope of finding a cure.

For now the girls are 'buying time' by
taking experimental drugs, while
making the most of life.

Jamie-Lee is studying journalism at
Griffith University. Sammy is in year
12 at Saint Stephen's College and plans
to study tourism next year.

The family has been overwhelmed by
support from the local community,
especially their school. Saint Stephen's
helped pay for Jamie-Lee's first
wheelchair and built ramps for
disability access. A school parent,
Bryan Vadas, is organising an
'Olympic style' fundraiser and is
seeking sponsors and volunteers.

"What the school is doing is amazing,"
said Jamie Lee

Published in the Gold Coast Bulletin
15 October 2009

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Saint Stephen's College
http://www.saintstephenscollege.net.au/saint-stephen-s-college-olympics.html

 

F.A.R.A. and Saint Stephen’s College Olympics

The Saint Stephen’s College Olympics, set to be run in March 2010, is being run to raise funds for research into a cure for Friedreich's Ataxia – a debilitating condition which affects 300 Australians including one former student and one current student of Saint Stephen’s College, Jamie-Lee and Samantha Dwyer. Friedreich's Ataxia does not have a high profile and the funds raised will make a real difference.  A relatively small increase in the research budget may bring about a cure within the next few years.

Students, Staff, Parents, and Old Scholars will field teams to play against each other in the sports of Soccer, Basketball, Hockey, Netball, Tennis, Touch Football, Softball, and Volleyball. Gold, Silver, Bronze and Participation medals (and not to mention sheer prestige!!) will be on offer to the competitors.

Information about F.A.R.A. (Friedreich's Ataxia Research Association)

Friedreich’s Ataxia (FA) is a rare disease that mainly affects the nervous system and the heart. Its major neurological symptoms include muscle weakness and, of course, ataxia, meaning a loss of balance and coordination. It doesn’t affect parts of the brain involved in thinking. Its effects on the heart range from mild, non-symptomatic abnormalities to life-threatening problems in the heart’s musculature. FA isn’t caused by anything a person does, and it’s not contagious. It’s a hereditary disease, caused by a defective gene that can be passed down through a family from one generation to the next.

Local Gold Coasters and part of the Saint Stephen’s College community, Jamie-Lee (Class of 2007) and Samantha Dwyer (Class of 2009), through a random genetic match-up, contracted FA, which has seen these once active, healthy girls, gradually succumb to the use of walking frames and wheel chairs for mobility.

F.A.R.A. needs to raise $100,000 a year over the next three years in each state to move this research forward. Close friends of the Dwyer’s have launched an ambitious fundraising campaign to help – The Saint Stephen's Olympics.

Treatments
There are currently no treatments for FA. Patients are monitored for symptom management. However, in the bleakest of terms, the prognosis for sufferers of Friedreich’s Ataxia is a deteriorating quality of life followed by premature death.

Research
Australia has long been at the forefront of research into this condition, and the world’s first dedicated FA patient clinic was established at Monash Medical Centre in Melbourne approx. 7 years ago. There are now teams of researchers throughout the U.S. and Europe, in addition to those in Australia, who are making a collaborative attack on this disease, and a number of promising drug trials are already underway. However, ethical stem cell research is poised to overtake most traditional drug-based research, and a research team based in Melbourne is leading the way, and it’s in this exciting area that we seek your support.

For the last couple of years, F.A.R.A. has provided seed-funding to a small team of stem cell researchers led by Drs Mirella Dottori and Alice Pébay at the University of Melbourne.  FA research is based on “ethical” stem cell research using the IPS method as opposed to embryonic stem cells.

  Website: http://www.saintstephenscollege.net.au/
 

also see Club Bulletin