Judged and jaded: our family’s story – Ataxia

Judged and jaded: our family’s story

Judged and jaded: our family’s story

Post Published: November 30, 2018

Jade was diagnosed with episodic ataxia at three years old, but still her school thought Ceri, her mother, was fabricating Jade’s condition… and placed Jade on a child protection register. Ceri shares with us what a Specialist Ataxia Centre for children could have prevented for her family.

Jade is 13. She loves the theatre, singing, drama, swimming and is a Harry Potter fanatic. Jade was just three years old when she was diagnosed with ataxia; she had a seizure, and I rushed her to hospital. 

She has difficulty keeping up with other children and finds physical activities very hard; but she still has a go at everything to see what she is capable of doing. Jade has a wheelchair for long distances as she tires so easily. When she’s tired, her speech slurs and she feels sick and dizzy. 

Risk of harm… from her family!

Even though we gained an official diagnosis for Jade, her GP still knows nothing about ataxia. Where we live, there is nowhere to go to get help and support. When Jade was younger, her primary school added her to the child’s protection register under the suspicion that we were fabricating her illness. They thought she was at significant risk of harm under our care. It was so hard to resolve this; my husband lost his company due to the stress we were under as a family.

This meant that while we struggled to keep Jade under our care, the school weren’t acknowledging the support Jade needed. 

 On our side

We always approach Ataxia UK for help and support. They are always there to support us in any way possible, for which I am eternally grateful. We now also have a neurologist who knows about ataxia. Already, having an authority figure on our side who supports what we say has made an enormous difference. Imagine how easy it could be if we had the support of a Paediatrics Specialist Ataxia Centre?

A Specialist Ataxia Centre for children would make all the difference in the world. There would be no more problems with professionals who haven’t seen anyone with ataxia before. Having someone who understands what Jade is telling them about her symptoms would mean everything to us.

A centre could be a powerful way to avoid such things happening to other children and their families in the future. A breakthrough in ataxia research would mean everything. If not a cure, then medicines that could better help Jade. To see my little girl not struggling on a daily basis would mean the world. We live in hope.

Living with ataxia as a child is difficult enough; the lack of specialists who can support you makes it far worse. We may reach our doubled income target soon, but you can still donate towards establishing a Specialist Ataxia Centre for children in the UK by generously giving through The Big Give website! 

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