Children with progeria appear as if they are aging at eight to ten times the normal rate (Image: Katt Lttanzio/Monroe Evening News/AP/PA)
A bizarre genetic disease that seems to accelerate ageing could hold the key to longer lives for everyone
LESLIE GORDON and her husband Scott Berns could not figure out what was ailing their infant son, despite the fact they were both paediatricians. He was failing to gain weight as he should, had cut no teeth and his hair was falling out.
The diagnosis, when it came in the summer of 1998, was devastating. Sam had progeria, a rare genetic condition that resembles the ageing process sped up. Gordon had never heard of it. She and her husband dropped everything and set about trying to learn more.
The news over the next week was bleak. Although progeria is a mysterious illness, some facts about it are undisputed. There was no cure and no treatments. Their son would get sicker and sicker and there was nothing they could do. The average age at which children with progeria died was 13.
There weren’t even any drugs in the pipeline. There was almost no research going on, says Gordon. “There was no funding. No tissues. There was no central resource for families. It seemed like a huge void of nothing.”
In one way that’s unsurprising – only 80 children in the world are known to have progeria. But the science void was something that Gordon could tackle. She quit her medical training to set up a charity, the Progeria Research Foundation, with the express goal of finding a cure, as well as providing support for affected families.…
