Facing ataxia’s huge challenges

Oli is 12 years old and has Friedreich’s Ataxia (FA). In Year 6 he kept falling over at school and was sent straight to hospital where he stayed for a week. In that time, he had scans, blood tests, more scans, a lumbar puncture and then a genetic test, which confirmed FA.

Mum, Erika, explains:  “Waiting to find out the diagnosis was awful and when the day finally came, my world caved in. I was signed off work and became very ill. As for Oli, I decided not to tell him for over a year-and-half because I felt it was too much for him to take. He was happy and knew what he could and couldn’t do so, for him, life was normal.”

Two years on, Oli knows he has FA and has regular appointments at Great Ormond Street Hospital.   Erika tries hard to keep Oli motivated to exercise, but it can be a struggle.  “I’ve explained the importance of exercise but that’s easier said than done – I wish there was more support for him to make exercise fun.  He loves playing Xbox as he can connect with his friends comfortably. He gets a lot of joy from it. He also enjoys swimming and playing with our dog. He enjoys baking occasionally too.”

During lockdown, Erika noticed a deterioration in Oli’s movement which she thinks was partly due to swimming pools being closed and him missing out on that as exercise.  Although he’s now been offered hydrotherapy sessions, these are limited and she continues to try and find another exercise that Oli can enjoy and which benefits his FA. “What we do is very limited as a family because of this. I wish there was more support for this condition,” she says.

Thankfully, Ataxia UK have helped Oli’s family, offering a friendly ear and practical advice.  “I couldn’t talk to anyone about the diagnosis until recently when I joined Ataxia UK. I feel very alone with this condition sometimes but, now I have Ataxia UK, I feel I have someone to talk to.”