Parents raise funds for cure research

BY PAUL RODGER THE parents of a toddler with a rare neurological condition that causes stroke-like paralysis are trying to raise £25,000 for gene therapy research to find a cure.

Anya Behl, of Edinburgh, is one of only two children in Scotland with alternating hemiplegia of childhood (AHC). The 18-month-old tot had her first episode at 10 weeks old.

Her parents Abhishek and Katherine said she let out a “terrible scream” and looked like she was having a stroke.

They rushed her to hospital and Katherine, who is a doctor, said they thought Anya was going to die.

After four months of tests, the couple were told their daughter had the ATP1A3 gene, which is responsible for about 80 per cent of AHC cases. Abhishek quit his job as a travel consultant to look after her full-time.

He said: “On average, she will have an episode two to three times a week, which can last between 45 minutes and an hour.

“One minute she’ll be happy and smiling and the next she is having

a seizure and being paralysed.

“We have to watch her like a hawk every day.”

Katherine said: “We just have to live truly in the moment and enjoy a good hour or good day.” The incidence of AHC is about one in a million births. The couple’s Anya is a One in a Million campaign has raised nearly £7000 so far to support research being carried out in the US. Katherine said: “We have real hope for advancements in AHC research.” Go to www.justgiving.com/ fundraising/anyab to donate.