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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... 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.

Megan said

This Jeans for Genes Day, on Friday 2nd August, everyday Australians can help Children’s Medical Research Institute produce outcomes that could change lives – just like Harrison’s.

Megan and Andrew, parents of two daughters before their son Jon was born, noticed that Jon still couldn’t lift his head at six weeks of age. Despite their concerns, they never expected to be told he had a devastating and fatal condition known as Spinal Muscular Atrophy, where the nerves connecting to the muscles in his body slowly die.


It went from nothing's wrong - to something is very wrong.

Megan said
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Andrew said he knew the condition was serious when doctors said they would understand if the family chose not to seek treatment.

“They said you could just take him home and love him, until he’s gone. That gave me an idea of how bad it must be.’’

Incredibly for Jon and his family, they soon learnt that there was gene therapy available for SMA. 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 – but it has still changed his life.

"I still remember the phone call saying it was going to happen, I just sat on the kitchen floor and cried because it was so surreal, thinking that our son was going to have this really new treatment that could really turn his life around," Megan said.

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... But we do have him – that’s what the gene therapy has done – we still have him.

Andrew said

"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 CMRI who are working on better outcomes for people with SMA was incredible.

“To go behind the scenes, and to see the research and talk to the people who are actually making these positive changes - it was really humbling to see what they were doing and how curious they were to hear how we were going. 

They wanted to see how they could keep improving it.

“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.’’

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Jeans for Genes raises money for the vital work being done by the scientists at CMRI to find treatments and cures for diseases including epilepsy, cystic fibrosis, cancer, genetic blindness, and many more of the 7000 genetic diseases that impact Aussie kids.

Sign up now to fundraise your own way. You can Bake it Blue with a cake stall, do some Ks for Kids by walking, running, skipping or any form of exercise you like – or simply wear jeans just like millions of Australians have done for more than 30 years.

Together we can beat children's genetic diseases.

Select your donation amount:

Fund next generation DNA sequencing to help us find the cause of a genetic disease.
Help our scientists develop better cancer treatments with fewer side effects.
Support Gene Therapy the 'Medicine of the Future' and cure previously incurable conditions with a single injection.

Accelerate the search for cures.

By donating monthly, you can fund research that will have an even bigger impact on children living with a genetic disease.