Why I’m doing Jeans for Genes
There is no doubt in the minds of parents Megan and Andrew
that their son Jon would not be alive today without medical research.
“At first, we were told ‘your son will not walk’,’’ Megan
said. “Then ‘he won't sit’, then ‘he
will die before his first birthday’. What the doctors were saying, just kept
escalating. It just got more and more extreme.’’
Jon was diagnosed with the fatal condition, Spinal Muscular Atrophy, where the nerves
connecting to the muscles in his body slowly die.
Incredibly for Jon and his family, they soon learnt that
there was gene therapy available for SMA.Â
This means one simple injection can replace the error in his DNA.
Unfortunately, the treatment cannot repair the damage to the nerves that has
already been done.
Jon suddenly was able to turn his head and lift his arms,
and while he uses a wheelchair for mobility, he can confidently move himself
around.
“It's still a tough road,’’ Andrew said. “But we do have him
– that’s what the gene therapy has done – we still have him. It's exciting for
Jon, but it's really, really exciting for children who are diagnosed at birth
and are getting the gene therapy earlier. I mean, it is essentially a cure.’’
Megan said meeting the scientists at Children’s Medical
Research Institute who are working on better outcomes for people with SMA was
incredible.
“I think the exciting thing is that what they're learning
through the trials with SMA can be applied then to a whole different range of
diseases, and it's really opening up realms of possibility of what can be done
for genetic diseases.’’
Join me. Share this message. Donate. Thank You!
My Impact
So far this year I helped provide...
47
Hours of research
For every $50 raised, one hour of research is funded
Funds raised over the years
Biggest Donor
Jean-ius Donor
$500
Thank you so much to my biggest supporter, Tom and Helen Frame, for donating an incredible $500 to help fund vital research into curing children’s genetic diseases.
Thank you to our Sponsors
$110
Matched Gift
Your donation has been doubled by our sponsors!
$110
Mary Liondi-barlow
$110
Matched Gift
Your donation has been doubled by our sponsors!
$110
Penny Cook
$32
Sarah Ebbage
$32
Matched Gift
Your donation has been doubled by our sponsors!
$21
Matched Gift
Your donation has been doubled by our sponsors!
$21
Sandie Moore
$56
Matched Gift
Your donation has been doubled by our sponsors!
$56
Daniel Valentine
Keep on rolling through those goals Jono! Megan is incredible and doing so much to support Jon and this cause!
$110
Matched Gift
Your donation has been doubled by our sponsors!
$110
Phoebe Gordon
$110
Matched Gift
Your donation has been matched!
$110
Megan
For my beautiful boy 💕
$53
Matched Gift
Your donation has been matched!
$53
Anonymous
$500
Matched Gift
Your donation has been matched!
$500
Tom And Helen Frame
A beautiful boy who has touched our lives
$104
Felicity Robson
For a beautiful man and a beautiful family
$32
Lykera Parker
Forever a shinning light little man 🩵
"Your donation has been doubled by our sponsors!"