Our children’s stories – Ataxia

Our children’s stories

Our children’s stories

Post Published: December 3, 2018

You’ve heard a different story each day of just how lacking care for children with ataxia is across the UK. From young adults with ataxia remembering their struggles, to parents who must watch their children’s right now, our campaign for The Big Give has highlighted just how much more is needed for our children to be cared for. 

This weekend, we hit our Big Give target: a fundraising campaign raising funds for helping to establish the UK’s first Specialist Ataxia Centre for children. We’re ecstatic with your generosity – as are the parents of over 500 children across the UK who have ataxia, and of course, the children themselves. Children like Kayden, Jade and Seb; children like Tallulah and Beka once were. 

… But the campaign isn’t over. 

You may no longer be able to double your donation, but you can still donate an invaluable gift to this campaign, no matter the amount, towards supporting children with ataxia. Over the years we’ve heard so many stories. Who else can you help this Christmas?

He was diagnosed at 18 months, but we thought something was wrong from when he was nine months old: he wasn’t able to walk; grew dazed at loud noises; choked when he ate and drank, and had a squint. A specialist tested for ataxia and he was diagnosed early on. All they could tell me was “there’s no cure, and nothing we can do.” He was monitored for years at Great Ormond Street Children’s Hospital in London, but was discharged because they no longer felt they could do anything for him. We just hope and pray for a cure for all children with ataxia, because some have it worse.

I want my son to be happy – I worry about him all the time. Do others feel the same?

I never really liked school, ever since I started primary. It’s not that I couldn’t do the work; I wasn’t stupid, I just hated it. I wasn’t being bullied by the pupils, I was being bullied by the teachers. My handwriting was scruffy and I couldn’t colour between the lines. The teachers would screw up my work or single me out in class. Every year my report said ‘Handwriting needs to be neater’. One teacher would physically pull my shoulders back and call me ‘Humpback’. After I’d had many tests, Mum and Dad were told I had Friedreich’s ataxia. Then they had to come home and tell me. I was 13.

It is so difficult to meet other people like me. It feels like I’m the only person in the world with ataxia.

She can only walk a short distance before her legs grow sore and weak. She just wants to be a normal child and be able to run around with her friends, but she’s finding it more and more difficult to keep up. She’s starting to realise she’s different. 

He wore the helmet until he was eight years old but has now stopped, noticing that he’s different to his school fellows. He still has accidents, but has taken responsibility for his own safety. The other kids don’t understand what ataxia is and laugh at his handwriting, which is affected by his condition.

And what could be possible for children with ataxia, thanks to your support…

The support from the London Clinic provides me with a sense of security and furthers my understanding of diagnosis. They are available to me if I need them and accommodate me and my parents if I have any queries or concerns throughout the year. The facilities I have available to me are a huge reassurance.

Thank you for helping us get there. Can you get us a little bit further? Donate to help children with ataxia.

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