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Henry Ford from Midsomer Norton has spastic diplegia cerebral palsy, a condition which means he struggles to walk unaided.

This is because the brain tells his muscles to tighten when they don't need to, making it difficult for him to grow. He uses a wheelchair and a frame to enable him to get around, and he sleeps in splints to help stretch his legs.

"At first it was difficult because obviously you get upset when you're stretching his tight muscles but then we raised money and we took him to the Brainwave Centre in Bridgwater and they helped us by designing an exercise routine.

"It comes at a cost so because we were paying for it, we were likely to keep up the program," said Henry's father Simon, a project leader for a Research and Development Firm.

Henry had a hard start to life as he lost consciousness when he was born prematurely at either 35 or 37 weeks, depending if you go by the scan or calculated date.

Henry uses a KAYE frame to walk

"He was our first child; we thought everything was normal until we realised his eyes weren't following things," said Simon, 33.

Fearing he was blind, it was only after an MRI scan was completed that Henry's parents, Simon and Polly, knew his exact prognosis.

"We were devastated, all thoughts go though your mind - how are we going to cope, what are we going to do," said Simon.

The fact that specialists could not tell Simon and Polly exactly what to expect as each case is different only added to their heartache.

Henry now attends St Benedict's Primary School, where he has full-time helpers. The other children in his school have reacted to him well.

"He's always had it - it's not like something he's had and then it's taken away from him - so he tends to accept it.

"It's more frustrating for us for when we think of what he possibly could do. He deals with it really, really well. He's a little fighter which is why we want to try and help him in any way we can."

To alleviate his pain, family and friends help to stretch his muscles out. He also has botox injected directly to the muscles as it helps to relax them, but this cannot be done too often as the tolerance of it improves.

Henry with his father Simon

"It's helped him greatly but nowadays he's starting to stiffen up more so it's harder and as he gets older he doesn't really want to do the exercises all the time because he has his wits about him," said Simon.

The family are now pinning their hopes on an operation available in the United States which looks at the spine to single out the sensory root nerves. The surgeons then electrically stimulate them to work out which nerves are giving out too much information. Once this is established, they can be cut back which would hopefully allow Henry to walk without the brain's restrictions on his muscles. 

This costs around $50,000 (£32,300). Fundraising has already begun in earnest as £2,500 was raised when one of their friends swum the Channel, and over Christmas they received private donations.

If he doesn't have this done, then as his muscles tighten, his growth will be restricted so he will have to have re-alignment surgery.

However the operation isn't without its risks.

"It would improve his level of comfort, [but it] all depends on underlying muscle strength - it's not something you can go and do.

"We've had him examined by the team in the USA and they think he's a typical case so there's a real good chance that he may walk unaided but they can't say for sure," said Simon.

But it is something the Fords - and all their family and friends - are keen to try.