‘My children’s condition makes them just two of seven cases worldwide – we’re racing against time’
A family whose two children have a gene mutation so rare they are two of just seven confirmed cases in the world feel like they are in “a race against time” to find treatments.
Mel Dixon, 45, and her husband Charlie, 47, who live in East Sheen, learned that two of their three children – Tom, 14, and Rosie, nine – have a DHDDS gene mutation after years of appointments and testing.
The neurodegenerative condition causes tremors, coordination issues, and learning difficulties, potentially leading to Parkinsonism and dementia.
When diagnosed, the couple were told that there were only 59 confirmed cases worldwide – although there are 70 documented now – and that there is no treatment
