Youngster does her part in increasing awareness for muscular dystrophy

[Guest guest]

(Note: just so we're all clear here, CMT is NOT a 'form' of Muscular Dystrophy.

I have just written a Letter to the Editor about this - G)

Youngster does her part in increasing awareness for muscular dystrophy

http://telegraphjournal.canadaeast.com/search/article/640505

Health Six-year-old Kristie DeGruchy will lead her school in today's Hop for

Muscular Dystrophy fundraiser

When bright-eyed Kristie DeGruchy ties on her tap shoes, she prances around her

dance class with the same enthusiasm as the other children around her.

The Grade 1 student of Hammond River Valley Elementary School is often

considered a clumsy child, mother explained, because of the muscle

weakness her muscular dystrophy is causing.

" But she's still able to run and do most of the other things girls her age can

do, " she said from her home in Lakeside, just outside Hampton. Like her

43-year-old mother who is now on disability insurance and relies on foot braces

or a cane to get around, Kristie was born with Charcot Marie Tooth Syndrome - a

form of muscular dystrophy.

It was first noticed, her mother explained, when Kristie started taking her

first steps. Instead of making her way flat-footed, she walked with her foot

turned beneath her to the point where she actually walked on the tops of her

feet.

Over time her walk was corrected with repeated cast wear.

In February Kristie was named the province's ambassador for muscular dystrophy,

not only because of her positive spirit, but for her efforts in helping in

fundraisers, particularly through the Fundy Chapter of Muscular Dystrophy

Canada. Known as Cupcake by the Saint -based chapter members, Kristie was

nominated by member and MD sufferer Jeff Sparks. Sparks is also the national

organization's community development officer for Atlantic Canada.

" From my perspective, for her age, Kristie is such a role model , " he said. " She

has such an outgoing personality - she's vibrant and energetic and sets such a

great example for young people in our organization. "

Today, for the first time, Kristie's school will hold its first Hop for Muscular

Dystrophy fundraiser. Sporting bunny ears and an eagerness to help raise money

for the disease through pledges, the school's students will hop their way

towards helping find a cure. These hop-a-thons take place in many provincial

schools and within other organizations around this time of year.

Before the Hammond River school's hop begins, Sparks will talk about Muscular

Dystrophy and make a special presentation to the young New Brunswick ambassador

in front of her schoolmates for her commitment to the national cause.

Kristie's disease is progressive, and if she follows in her mother's path, her

muscles will continue to deteriorate over the years. It's a reality that

Kristie's parents and have never denied.

" She is always asking if I could do certain things when I was little, "

explained. " She asks if she will have to wear braces when she gets older, and I

always tell her that everyone is different. "

Kristie's level of understanding for her mother's condition could only come from

someone, even at her tender age, who gets what it means to have certain

challenges with movement. Kristie helps her mom put her braces on and off, she

walks a slower pace when she is with her mom, and when drops something,

Kristie automatically bends to pick it up.

" Kristie is a remarkable little girl. She is our blessing, " said. " I'm

thankful I'm not in a wheelchair because I know I could be.

" Now that I'm a mother of a child with this disease I understand how my parents

felt when I was diagnosed and the doctor said I would likely be in a wheelchair

by the time I was 40 or 50. My father cried, " she added. " There is nothing more

you want as a parent than the best for your child, but we also keep in mind that

there's always someone else worse off than you. "

Kristie is an only child, and with her parents, plays a large role in organizing

the successful Walk for Muscular Dystrophy held on Harbour Passage each summer.

This year that event takes place on June 27. For more information, visit

muscle.ca/walk.

Five-year-old Sam of Fredericton is the province's second ambassador for

muscular dystrophy for 2009.