Jerry

Jerry really is one of a kind,” says his mum, Bess.

He was born with a rare genetic condition known as SPG-50 Associated Heredity Spastic Paraplegia. Its stolen his voice. Its stopped him from being able to feed himself. Its taking away his ability to walk. He will likely lose his cognitive abilities, he could go blind, and he may never grow to become an adult.

Jerry is four. He loves to be silly, to be cheeky, really. Hes got the most beautiful chocolate brown eyes that can tell you exactly how hes feeling and what hes thinking.

From the moment Jerry was born, I worried something wasnt right.

There were the little things, like how his head seemed small at birth, or how he just seemed more placid than our other kids at his age. It wasnt until his development became delayed that I knew I wasnt overreacting.

Im a paediatric nurse, so Ive seen some pretty difficult things. Thats why when we first suspected Jerry had developmental delays, we felt lucky that we would be so well equipped to help him.

We knew that we could offer the physical and emotional support hed need. But, what we didnt know, was what lay ahead."

Research is so critical. Not just for Jerry, but for 1 in 20 Aussie kids born with a genetic disease or birth defect.

Bess says, After Jerrys diagnosis, I did a lot of reading and tried to see hope, but there didnt seem to be any.

It wasnt until I started talking to a parent on the other side of the world, in Canada, whose child has the same condition, that I finally found the hope I was seeking.”

Right now, scientists at Childrens Medical Research Institute are working on finding gene therapy treatments for children like Jerry. Gene therapy has already proven effective for many genetic diseases that were previously seen as incurable.

Theres now real hope where there wasnt any before.

With your help, research can find answers for children like Jerry and help give back what genetic diseases take away.