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Relatives

Graham, father

How do you raise half a million pounds for charity? First of all, something extraordinary must happen to you. Something which forces you to re-assess your life and ask yourself questions that you never wanted to ask. Read more.

Hannah (daughter, 11 years old)

My dad suffers from Friedreich's ataxia. We have a family of five, my mum, dad, older sister, younger brother and me. I think our family is perfect.

Yes, we have arguments from time to time but what functional family doesn’t? All a father has to do is love.

My dad does more than that. He has supported me and the rest of the family and cared for us all our lives. He is the most reliable man I know. I don't think there is anything an able bodied father can do that a wheelchair bound dad can't.

This has been written as a tribute to my dad because he could not do more for me as a father even if he could walk. He is a model dad and to me the best in the world.

Liz, mother (and a GP)

Our eldest daughter was always a slightly awkward little girl. When she went to school at five, she started in January. For some reason she was absolutely terrified. There was ice on the pavements when we walked to school, and ice in the school playground. Looking back, I think she was finding it difficult to stand on her feet, and playtimes were the difficult times. I had absolutely no understanding about what was going on..

When she was ten or eleven she slowed her writing down totally and started writing with her elbow on the desk. She’d worked out that this was a way of keeping her writing tidy. And still nothing was talked about.

When she was fifteen she became terribly tired at school and extraordinarily wobbly. So we went off to see her GP.

This is where I come clean and tell you that I was a GP myself, so I can see this from both points of view. I have never in my work seen another case of cerebellar ataxia. I didn’t know what we were dealing with either, and there are lots of causes of children being wobbly.

Peripheral sensory neuropathy was the diagnosis. Which is a terrible mouthful. Everyone would say ‘What’s that? And how do you spell it?” And you’d spend hours trying to explain.

When she was seventeen, our daughter was offered a genetic test. It was very important that it was her decision to have the test. It showed she had Friedreich’s ataxia.

My husband is very quiet, but I know that he’s had a lot of sadness because of the diagnosis. It dawned on him that we had two other children who were also at risk.

We did find that life’s a lot easier once you have a label. A lot of people never get a diagnosis, and have to deal in that grey area for years.

How do you cope? We all cope in different ways. We coped by not making ataxia the focus of our lives. And I really respect the people who’ve done so much for Ataxia UK.

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