MAKE A WISH COMES TRUE
|And it's party time as with any excited boy|
One in 6,400 children is born with Spinal Muscular Atrophy or SMA. It's a neurological condition meaning the muscles don't get the messages from the brain to make them work.
But for one wee man that has it, a wish he made came true.
Keith Chegwin meets the Morris family from Swindon - Sandra, Doug, Emily, who's one-year-old and Ben who's four-years-old. It's Ben that has SMA.
When Ben was born, all was fine. He seemed bright and happy and was piling on the pounds.
But things started to go wrong at about 6-7 months.
Both Sandra and Doug are carriers of the faulty gene responsible for SMA.
Normal tests during pregnancy aren't designed to pick it up.
When Sandra was pregnant with Emily, she was able to have tests to see if she had the gene, as by then the doctors knew both parents were carriers.
Of all the children born with SMA, almost half will die before the age of two.
Bucking the trend
|The tragedy is not knowing of the faulty gene|
Ben has severe "type 2". According to the text books he shouldn't have survived
beyond the age of two. But Ben is made of sterner stuff.
Keith Chegwin is a patron for the "Make A Wish Foundation" and was invited to Ben's fourth birthday party along with a secret and very special guest.
Sandra, Ben's mum, talks of daily life with Ben, "It's difficult to explain, but emotionally its very difficult to cope, but you've still got this little boy who needs you and you have to drive yourself forward."
Meal times for Ben mean plugging into a milky drink for an hour, four times a day.
The naso-gastric tube delivers all the nutrients he needs.
Ben finds it hard but he can eat normally as long as its soft stuff just for pleasure.
Sandra is just like any mum, "There are times when we just give each other a great big hug and we know we both need it.
"There isn't a cure at the moment I just wish they'd speed up. We were invited to take part in a trial. But they're in America and time is of the essence with Ben.
"You have to get on with life - he still lives - he's not sick as such."
Cheggers to the rescue
And it's for this special young man that Cheggers makes a dream come true - his adventure with a special dream builder - Bob the Builder.
|Cheggers is always up for the fun with the kids|
"Oh he's off I think, he's off", says Cheggers, "go for a burn up the street
gotta call him spud from now on, I'm gonna call him spud from now on."
But getting the things Ben needs hasn't been easy. The family have had to fight to get the wheelchair for Ben.
Sandra almost dreaded it coming in the end. "We had to prove in all sorts of ways that he was able to drive it. That's it he was away - I can now yell at him like any other mum and don't have to carry him."
"He's my little prince and he always will be even if he can't walk. He's just got wheels instead of legs. He's just got wheels instead of legs."
And Cheggers finds out about the naughty side of Ben. "What's the naughtiest thing you've done in your wheelchair," he asks.
"Go really really fast and mummy turns me off," says Ben with a glint in the eye.
Cheggers seems to be a tad jealous of his wheels, "That means I can drive
what's the really fast button
.I gotta get one of those.
"I think we should go for a burn up the street
let's go and annoy the neighbours!
"Ben will probably go to bed tonight smiling, and it's nice to see a smile on mum's face too."
If you would like to contact the
Make a Wish Foundation, write to:
Make-A-Wish Foundation UK
329/331 London Road
Phone: 01276 24127
Fax: 01276 683727