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28 October 2014
Inside Out: Surprising Stories, Familiar Places

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   Inside Out - South: Monday January 10, 2005

MAKE A WISH COMES TRUE

Ben and his family
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

Ben Morris
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
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."

Contacts

If you would like to contact the
Make a Wish Foundation, write to:

Make-A-Wish Foundation UK
329/331 London Road
Camberley
Surrey
GU15 3HQ

Phone: 01276 24127
Fax: 01276 683727

See also ...

On the rest of Inside Out
Lydia's story

On bbc.co.uk
Health

On the rest of the web
The Jennifer Trust
Families of Spinal Muscular Atrophy

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Readers' Comments

We are not adding any new comments to this page but you can still read some of the comments previously submitted by readers.

Irene Gray
Being a volunteer for make a wish for 16 years I was so thrilled to see that we were receiving some publicity for the good work that we do, it is also so important that we are able to recruit volunteers to continue to carry out this so needed charity. some of our stories are real fantasy giving a child and its family memories to hold forever - more opportunities for us to tell our stories about our charity welcomed, your viewers are needed to volunteer.

Tracy
I thought Sandra and Doug were amazing, their courage is an example to us all. They are wonderful parents and a lovely family.

Carl Taylor
Please pass the following on to Sandra and Doug for me. I saw the programme lat night and was overwhelmed with emotion. I have a 2 year old daughter Olivia and your son Ben has the same love of life that she has, remarkably so, considering his disability. I'm always knocked sideways with respect for people (children especially) who under the most extreme of circumstances still manage to try to live their life to the full. Ben is a wonderful, brave little boy of whom you are rightly very proud. Best wishes and all my love to you all

David Hazell
A wonderful boy and an amazing family. Young ben seemed so happy and is a credit to his loving parents.

wendy ingrey
we were moved to tears at this little boys smile we have a granddaughter age 3 who had a heart op at 10 days to repair aoto to heart, now she is singing twinkle twinkle litte star at christmas we send her admiration and love to the mum and dad how special they are. The foundation is going to be one we shall donate to.

lucie
well done make a wish i love to see all children with disibilities and illneses being treated equally and having there needs met and i know from working with them it ccan be so very rewarding



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