We caught up with Jade’s mum Ceri to find out how the rare condition episodic ataxia affects her daughter who’s just celebrated her 10th birthday. For Ceri, it’s all about making sure that Jade has a full childhood and can spend plenty of time enjoying her favourite place: the great outdoors…
Jade has one of the rarest forms of ataxia; she can be quite well one day and really unwell another day. Ataxia is not always a very visible condition, and one of the things we’ve found hardest is that even some experts don’t really understand how the symptoms affect Jade in her day-to-day life.
Luckily the school she’s at now have been fabulous. They always look to get the best out of Jade and she’s included in everything. She loves being outdoors and went canoeing with the school recently. She did fine on the calm water, but could not manage the rapids because the rushing water brought on the vision problem that is part of her condition.
The summer holidays are easier for Jade because she can rest whenever she wants. A full school day can be hard for her as she gets pains in her legs, dizziness and vertigo, and gets very tired. She has been bullied for being ‘the disabled one’ but the school dealt with it straight away, and her closest friends understand.
When she is well, Jade can walk and run, but for longer distances she needs a wheelchair. At school, on a good day she can walk upstairs but often needs to come down in the lift. She’s learning to touch type and doing her best to keep up as she is the youngest in her year.
Some days, when her legs hurt, Jade says to me, ‘Why can’t I keep up with the other kids?’ All I can do is make sure she has equipment like a tablet and computer to compensate for the days when she is too tired to go out, and feels frustrated and a bit low. On good days, we go at 100 miles an hour to make up for the bad days!
We’re waiting for physio at the moment, and are also hoping that Jade will go under the care of a specialist based in Sheffield. It’s a long way from where we live in Wales, but will be worth it for her to get the best care.
Jade is a real outdoor girl. She loves swimming and can do butterfly stroke now. She didn’t have the strength to push the pedals on the bike we got her, and couldn’t balance on an electric scooter so, for her 10th birthday we got her a special trike as a surprise.
The weather has helped this summer as it hasn’t been too hot or cold. We find that extremes of temperature can really affect Jade. In fact last Christmas, because it was very mild, was the only Christmas when she hasn’t been stuck on the sofa.
Jade’s a very confident girl and always wants to do everything. We recently went to a funfair and she couldn’t wait to have a go. She said to me, ‘I feel dizzy anyway, so going on the spinny rides won’t make any difference’!
You can find out about research we have funded to help children affected by ataxia here.