“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. It’s stolen his voice. It’s stopped him from being able to feed himself. It’s 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. He’s got the most beautiful chocolate brown eyes that can tell you exactly how he’s feeling and what he’s thinking.
“From the moment Jerry was born, I worried something wasn’t 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 wasn’t until his development became delayed that I knew I wasn’t overreacting.
“I’m a paediatric nurse, so I’ve seen some pretty difficult things. That’s 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 he’d need. But, what we didn’t know, was what lay ahead."
It was heart breaking to learn that despite all the support we knew we could offer, his disease was going to slowly take everything away.”
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 Jerry’s diagnosis, I did a lot of reading and tried to see hope, but there didn’t seem to be any.
“It wasn’t 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 Children’s 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.
There’s now real hope where there wasn’t any before.
With your help, research can find answers for children like Jerry and help give back what genetic diseases take away.