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Henry's determination shine's through

There are many forms of ataxia – the name given to a group of neurological disorders that affect balance, coordination and speech – making each person with it pretty unique.  Five-year-old Henry is no exception – his love of life is infectious and his ability to cope, despite episodes of being ‘wobbly and sick’ is remarkable.

Mum Laura was concerned almost as soon as Henry was born – he would have episodes of ‘upward nystagmus’, where his eyes would bounce up and down in his head.  He went on to be diagnosed with a number of other conditions, all of which he was expected to grow out of as he got older.  She joined a support group on Facebook for one of the conditions, which turned out to be the starting point to Henry’s final diagnosis.

“A couple of children on the support group had been found to have Episodic Ataxia Type 2 (EA2), which had been diagnosed by genetic testing so, in 2013, I contacted Henry’s neurologist to ask if he could be tested too.  The results took about seven months and did show Henry had a genetic mutation indicating EA2,” says Laura.

By the time this conclusive diagnosis was given to Laura, Henry was four-and-a-half, but the realisation that the EA2 was not a childhood condition that he would grow out of was a shock to the family.

“We always held on tightly to the possibility that he would grow out of it, so the new diagnosis of a lifelong condition was very hard to come to terms with.”

Laura found out about the work of Ataxia UK through a support group online and decided to do a tandem parachute jump, raising a fantastic £1,200.  “I value the work they do to raise public awareness of this rare condition – it’s not easy trying to explain Henry’s ataxia to people, so the more they can do, the better.”

Luckily, Henry’s school have been very supportive.  As the name implies, Henry’s ataxia causes episodes, one to three times a week of three to six hours each, which cause him a lot of distress.  He feels dizzy and nauseous which can lead to vomiting and disorientation.  Unfortunately, the trigger for these episodes can often be the excitement of something, for example a school trip or a day out, which in turn leads to him missing out on these activities when the ataxia strikes.

Laura is very proud of Henry’s determination to pursue his interests such as horse riding and swimming lessons, “He does cope with the condition amazingly well, he is so brave and incredibly good at telling us exactly how he feels, which helps us.”

His constant companion is his seven-year-old brother, Oliver, who has to accept that everything stops if Henry is having an ataxic episode.  “He does a great job of looking after his little brother and will often curl up in bed with Henry to keep him company when is unwell.”

Ataxia UK is the leading national charity for people with ataxia, providing support to people with ataxia as well as funding vital research into treatments and ultimately a cure for one or all of the ataxia’s.
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