'Mr Bump' boy with rare condition that makes him fall over gets new suit to keep him upright - News - Evening Standard
       

'Mr Bump' boy with rare condition that makes him fall over gets new suit to keep him upright

It is a moment his parents thought they would never get to see.

Suffering from a rare condition affecting his balance and co-ordination, three-year-old Alfie Ecclestone toppled over every time he got to his feet.

But thanks to a revolutionary Lycra 'wet-suit' that acts as a 'second skin' the toddler is now learning to walk like other children his age.

"Before he got the suit he would be covered in bruises from falling over and bumping into things," his mother, Anita, 39, said.

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Back on his feet: Alfie Ecclestone's wet suit acts as a 'second skin'

"We had to keep an eye on him constantly, even more than any other three-year-old because he was so prone to hurting himself.

"He's still a little wobbly on his feet and very much like a child taking their first steps but with the suit he's hardly ever fallen over."

The suit, which costs £500, is designed to improve Alfie's movement and posture so that he can walk around without fear of falling.

He will wear it beneath his clothes for up to six hours a day until doctors can establish exactly what is wrong with him.

"Alfie always crawled differently to everybody else, but we didn't think anything of it until he started walking," said Miss Ecclestone, from Halifax, West Yorkshire, who looks after Alfie full-time.

"It's upsetting because people ask 'what's wrong with your little boy" when he falls over and they can see his injuries, and you don't really know what to say.

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Good boy: Mum Anita says Alfie has hardly ever fallen over with the suit

"Now he hardly falls over, but when we take the suit off he becomes all wobbly again and falls to the floor.

"It's helped a lot but he grows out of them so quickly."

Doctors intend to carry out more tests in the coming weeks but believe his condition could be related to Ataxia, a rare disorder affecting movement.

"We are desperate for Alfie to be diagnosed," added Miss Ecclestone, who lives with Alfie's father, Jason Charles, a 38-year-old traffic warden.

"Doctors have tried everything but the tests have not come up with anything. No-one knows what's wrong.

"It's so frustrating because I want to be able talk to another family whose child is affected by this and see how they have coped with it, but Alfie's case seems to be unique."

"The NHS pay for his suit so that's not an issue, but in the long term we just want to find out exactly what is wrong with him."

Despite his apparent illness she insists Alfie, an only child, is still a happy three-year-old who refuses to let it affect his adventurous nature.

"Apart from his balance he's just a happy, normal three-year-old who enjoys playing at nursery with his friends. He hardly ever cries or complains. He's a very adventurous lad and he doesn't let it hold him back."

Ataxia, which means 'absence of order', affects parts of the nervous system that normally control co-ordination and balance and may also be a symptom of other conditions such as multiple sclerosis or cerebral palsy.

Dr Laura Rooke, researcher for charity Ataxia UK, said: "Adults and children with ataxia can have difficulties performing everyday tasks such as walking, dressing, and reaching for objects.

"There is a growing body of research which shows that the wearing of custom made, snugly-fitting lycra garments may help to improve posture and movement in people with ataxic symptoms and several other neurological conditions, although exactly how they have this effect is not known.

"We are currently further investigating the wearing of Lycra garments in volunteers with cerebellar ataxia. They hope to tell us more about the therapeutic benefits of these garments and how well they control ataxia.

"Potentially they could help children and adults with ataxia and other neurological conditions to improve their control of movement and carry out tasks more independently."

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