Ceri and her daughter Jade both have episodic ataxia. They live in Wales where the appropriate care for ataxia is limited. Here Ceri tells us what it would mean to her family to pilot a virtual ataxia service.
It took me eight years to find Jade a suitable neurologist who has knowledge about ataxia. The previous neurologist did not have a clue about ataxia, and was more interested in her weight than anything else. Our local GP’s also have no idea what ataxia is, and once asked me to explain the condition. Then they told me they’d have to look it up! They wouldn’t have any idea about how to manage Jade’s ataxia if she was really unwell and needed to see them.
Although Jade takes medication for her ataxia, she struggles during the winter, and needs to see a neurologist who specialises in ataxia. There is no paediatric neurologist that specialise in ataxia in Wales and it is becoming a huge challenge for us to find her appropriate care.
Despite the fantastic news that the new Ataxia Specialist Centre for Children has opened in Sheffield, it isn’t an option for our family. Travelling there would be very expensive, plus a night’s stay in the local area would add more to the cost. Then, Jade would not cope with the amount of travelling in one day, and I’d have to leave my son at home who has autism and needs me.
To have a virtual ataxia service would mean absolutely everything to us. We have been praying for something like this, but could only dream about it until now. To be able to have a conversation with a specialist in the ataxias would be wonderful for us.
You can transform lives like Jade’s by donating to the Big Give Christmas Challenge during 12pm 3 December and 12pm 10 December where your gift will be doubled. Your gift will go towards piloting a virtual ataxia service so families can access appropriate diagnosis and treatment. Donate today!