Jade's voice is heard

Four-year-old Jade is a happy, active little girl who loves parties and horses and is looking forward to starting ballet lessons.

Her first year at school has seen her overcome many challenges, not least the need for her school to make the right adaptations to allow her to move safely around the site.

Jade has a specific type of ataxia which is made worse by a simple cold or cough, triggering attacks which cause her to lose control of her body. The attacks can come on so quickly that within an hour she will have lost vision and movement, lasting up to two weeks.

Outside of her home, Jade uses a wheelchair, which meant her school needed to make changes to allow her to access the facilities, such as painting markers on the stairs and widening doors. Ataxia UK’s advocacy team have been helping every step of the way, liaising between Jade’s family and her school to make sure her voice is heard and her needs met.

Jade’s mum Ceri said: “I was so worried when I found out Jade had ataxia – I cried for a week. But then I found Ataxia UK and they have been so helpful with information, events, and support.”

Helping young people like Jade is one of the many ways Ataxia UK supports families affected by ataxia, a degenerative brain condition which can so cruelly rob a child of their co-ordination, mobility and therefore their independence. Their helpline takes up to 400 calls and emails a month, many from parents whose child has just been diagnosed with a condition that even the medical profession can struggle to recognise. Trained advisers help with practical issues such adapting the home, helping a child manage their emotional needs or providing child-friendly materials to explain about ataxia.

The reality is that right now there is no instant cure for ataxia, but your donations are helping to make life a little bit easier for those who live with the condition.

 

 

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