5-year-old with rare condition appears to be DRUNK

Staggering around and slurring his words, five-year-old Henry Barber-Riley appears drunk.

But while looking as though he's had one drink too many, the youngster's actions are in fact the result of a rare genetic condition.

It affects his co-ordination, balance and speech, causing him to appear as though he is inebriated.

Henry, from Lutterworth, Leicstershire, suffers regular episodes where he becomes dizzy, loses his balance, is unable to speak properly and can even be sick.

He has been diagnosed with episodic ataxia type 2 (EA2), which affects the central nervous system, and is so rare it affects fewer than 100,000 people worldwide.

As a result it took five years before Henry was diagnosed with the condition.

His mother Laura Barber-Reily said her friends even told her that Henry looked 'stoned' in photographs.

The 35-year-old said: 'The best way I can describe Henry's episodes is that he appears drunk, becomes very unsteady on his feet, and his balance is severely affected.

'It also makes him very sick and during the worst episodes his speech can become slurred.

'It is really scary to see your child struggling to talk.

'When he is really bad, which is not that often, he gets disorientated, starts slurring his words and is like someone that has had one too many.'

She added that they don't know what triggers the episodes and there doesn't seem to be a patter governing when he will be affected.

Sometimes, her son will have around two or three episodes a week, and at other times he can go for a fortnight without having one.

Now, he takes drugs which help control the symptoms.

'He copes amazingly well with his EA2 and will even put himself to bed if he needs to. He is very strong minded,' Mrs Barber-Riley said.

'Sleep is always the cure though. If Henry can get two or three hours of sleep after an episode then he wakes up feeling much better.

Mrs Barber-Riley first became concerned there was a problem with her son, when his eyes started rolling into the back of his head as a newborn.

But after she was told that this was the case with many infants, she felt reassured.

However, at his six-month check up, a health visitor noticed the eye-rolling, and Henry was referred to a neurologist.

He was diagnosed with paroxysmal tonic upgaze (PTU), a rare condition causing the eyes to roll back while the chin is held down, which has only been diagnosed in 100 babies across the world.

But as her son's eye-rolling became more frequent, Mrs Barber-Riley, a mother-of-two, started to fear the problem was more severe.

By the time he was two, he started having what Mrs Barber-Riley now recognises as episodes of EA2.

'Henry would become very unsteady on his feet, almost like his balance was affected, and he would be very sick during them,' Mrs Barber-Riley said.

'Henry's eyes would bounce up and down in his head when he was having an episode to start with.

'As things progressed, Henry would go a white, grey colour and get dizzy before going all over the place.'

After Henry was diagnosed with PTU, Mrs Barber-Riley researched the condition online, and discovered parents of children with the condition who had gone on to find out their children also had EA2.

She asked doctors to conduct genetic tests, after noticing that many of Henry's symptoms matched descriptions of EA2.

As it is is a genetic condition Mrs Barber-Riley and her husband Brian, 35, knew that there was a chance that either of them could be carriers of the illness.

It turned out Henry's EA2 was caused by a random mutation in his DNA, as his parents were not carriers.

Despite the extreme nature of his condition however, Mr and Mrs Barber-Riley manage to deal with Henry's illness.

While he is at a disadvantage to other children, Henry has started school and his parents have attempted to provide him with as normal an upbringing as possible.

The couple are now raising awareness about EA2 with genetic disorders charity Jeans for Genes.

They want to raise money for the online network that helped them so much throughout Henry's diagnosis.

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