Walking to raise awareness

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Walking to raise awareness

(Moderators note: One more time, CMT is NOT a 'form' of Muscular Dystropy! And

yes, I have contacted the writer of this article ~ G)

http://www.amherstdaily.com/News/Local/2010-06-17/article-1351627/Walking-to-rai\

se-awareness/1

Noiles doesn't know a life without pain.

The five-year-old Grade Primary student was diagnosed at a very early age with

Charcot-Marie-Tooth (CMT) disease, which is a form of muscular dystrophy.

" He was born with it, so he's used to the pain, " said his father, Mike.

Because of the medication 's on, he doesn't feel the pain.

" And he doesn't tell us when he is in pain, " his father added.

's mother, ita, and two of his three older sisters will be joining in

on the Walk for Muscular Dystrophy later this month in Moncton.

" It's harder for us as parents, " ita said. " Because of the fact that he

truly loves sports and as he gets older, his problems are going to get worse. "

CMT wastes away the muscles in arms, legs, hands and feet, leaving the person

weak.

Because of this, may not be able to play aggressive sports, such as his

favourite - hockey.

" He can't drive bikes. He'll have to learn to type because he won't be able to

write, " said ita.

Mike says his son falls quite often and is clumsy because of the CMT.

On June 27, the family will be traveling to Moncton for the 12 p.m. walk, which

will see participate in the route from a wagon.

" The one thing I'm hoping it will do is raise awareness of CMT, " said ita.

" When we go to the hospital or to see a new doctor, no one knows what it is.

It's not rare, but it's rare for them to diagnose. Someone can live with it for

years and not know it because it doesn't affect them that much. "

As a baby first starting to crawl, would drag his body along the floor,

which didn't cause too much concern, said ita.

" But when he started walking, for the first six months he would be dragging his

leg, " she said.

After the doctor told the family nothing was wrong, they kept pushing and

was finally referred to a neurologist.

The neurologist had walk and complete a few other tasks before the

neurologist told ita and Mike their son had CMT.

" He had a very severe case of it for his age, " she said.

Finishing his first year of French Immersion in a couple of weeks, said

his favourite subject at school is gym.

Other than hockey, he likes baseball, soccer and golf, and his favourite colour

is blue.

With an initial goal of $100 for the walk, ita and the girls are now around

$300 raised.

Anyone wishing to make a pledge can do so by contacting ita by phone at

661-1521, on her Facebook profile or by searching for her name at www.muscle.ca.