Young battler Adam Butterfield takes a step closer to walking

Adam Butterfield pictured on the new bike with mum Nicola alongside.
Adam Butterfield pictured on the new bike with mum Nicola alongside.

A LITTLE boy fighting an extremely rare condition that affects every cell in his body is a step closer to being able to walk and play like other children.

Four-year-old Adam Butterfield suffers from chromosome abnormality Emmanuel Syndrome, a condition so rare there are only 200 cases in the world.

Doctors had told his parents Nicola McAllister, 37, and John Butterfield, 40, that Adam could suffer a string of health conditions including heart seizures, kidney failure, asphyxiation, and an inability to walk.

But his parents are feeling optimistic as a £1,850 specialised trike is giving Adam the freedom to move his feet and be able to play outside with other youngsters.

Nicola, from the Acre Rigg area of Peterlee, said: “I cried to see him sitting on a bike - I cried and Erica Walkington, who brought it from the charity that donated it cried.
It will definitely help him develop, it’s really strengthening his legs.

“He has a standing frame, but wasn’t moving his legs round and round or from side to side – it will hopefully help him with a chance of walking.
“It’s an extra chance he didn’t have before.”

Former Stockton Borough Council worker Nicola added: “It’s good exercise for his legs and it’s nice that he can go out on a bike and look like other kids on their bikes instead of being stuck in the house and in his wheelchair.

“He had not really been able to move and exercise his legs, but now I can put him on the bike, and for his legs to go round and round, it’s marvellous.”

Adam had an operation earlier in the year that his parents hope will help him be able to walk.

It involved surgeons rotating his hip and putting the lower half of his body in plaster.

After the plaster was removed, Adam had to have botox injections in his legs as the muscles in his thighs had shortened so he couldn’t stretch his legs.

He has been having physiotherapy and it was his physiotherapist who told Nicola about the Middlesbrough-based Remembering Rebecca charity, which paid £1,600 towards the cost of the trike.

The specialist trike has calipers to keep Adam’s legs in place, a harness and lumber support, adapted handlebars and parental control bars so Nicola can steer and brake.

It can also be dismantled and put in a car so Adam, who will need care for the rest of his life, can take his new wheels wherever he goes.

The youngster, who is due to return to Howletch nursery in September, has had so many operations and trips to hospital, his parents have lost count.

There are only 12 reported cases of the syndrome in the UK.

Some sufferers do not live beyond childhood, but others are known to have lived into their 60s.