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I lost the friends I grew up with because they couldn’t understand, or didn’t want to understand, about the Friedreich’s. They just avoided it, and me in the process.

I was given 20 hours help in lessons. This was absolute hell for me. I’m a very independent person and I felt smothered. But everyone kept drumming into me that if I lost the extra help now and wanted it in the future, I’d never get it back.

Nikki is now at college

I just wish I had told the bullies what I thought of them. It’s still there, deep down, and these days I don’t let it bother me, which it easily could. But I would never let them beat me.

Today, Hayley is a writer, playwright and poet

Whether your experiences are like Nikki’s or Hayley’s or much happier, remember, you’re normal. It’s other people’s attitudes that are odd (and need to change).

For your legal rights as a young person with special educational needs, visit Contact a Family.

Childline has tips on dealing with bullying (although not bullying where you are picked on because of a disability). Also check out the Anti-Bullying Network.

If you would like to tell other people about your experiences of having ataxia and being at school, email alex@ataxia.org.uk.

Helpline: 0845 644 0606

School