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Fantastic family support

Eight-year-old Jade loves to play the recorder, horse ride, canoe and dance, but the ability gap between her and her friends is widening, as her ataxia prevents her doing as much as she would like.

Diagnosed when she was a toddler with episodic ataxia, which affects people in bouts or attacks of unsteadiness lasting hours or days, Jade tries to lead a full and active life with the help of her Mum, Ceri, who knows Ataxia UK are with her every step of the way.

 Although a paediatrician first noticed a weakness down Jade’s left side when she was only a few weeks old, it wasn’t until just before her third birthday, during a frightening trip to A&E, that Ceri first heard the word ‘ataxia’. “Jade was lifeless in my arms when I walked into the hospital” said Ceri.  By chance, there was a neurologist on duty that day, who recognised Jade was exhibiting classic signs of an ataxic attack, which on this occasion had been triggered by acute tonsillitis. “I was shocked as I have never heard of ataxia before.  The first thing I did when we got home was to search for information on the internet – I was horrified by what I read.”

However, Ceri soon found an Ataxia UK internet forum, where Patsy, who has ataxia herself, took Ceri under her wing.  “Patsy said to me ‘you’ve heard the worst, now you can look for the positives and influence Jades future’.  Well, that was the turning point for me, she helped me put things back into perspective and lifted me off what I can only describe as a rollercoaster of despair,” said Ceri.

Ataxia UK, along with the support of other people with ataxia, have helped Ceri to understand how she can support Jade.  The nature of episodic ataxia, as the name suggests, means that she has good and bad days, or even good or bad parts of a day.  Ceri says this is something people find hard to understand.  “Even planning a few hours out as a family is hard as we don’t know how Jade will be on that day, at that time.” 

“Her ataxia causes her a great deal of pain, aside from the mobility issues she has,” Ceri explains.  “At the moment she is struggling a lot with her legs and often cannot stay for a whole day at school, we are waiting for more appointments to find out what is happening with her ataxia.  As she is getting older, we are noticing more that she is struggling to keep up with her friends, they are dashing around all over the place and Jade can struggle just to stand up from the floor after story time at school.  She loves to take part in activities as much as she can – canoeing with the school and a dance class adapted for children with disabilities, but only when her body allows.”

The whole family, including Jade’s older sister Charlotte are keen to help her to do as much as she can.  Charlotte attends Ataxia UK conferences with her Mum and Jade, which they all find very rewarding.  “Meeting other people in exactly the same situation makes a huge difference, you realise you are not the only ones.  Without Ataxia UK and all the people involved in supporting us, I would be one very frightened Mum."

Thank you for your donations to Childlife which are helping Jade and her Mum to manage everyday life with ataxia and enabling them to get the support they need from Ataxia UK.



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