Family, friends rally for teen with rare disease

November 20, 2008

By Meghan Callahan

ndraiser.article

Diseases may not be entirely scary - sometimes they can have the

power to draw a family closer together.

Tyler , 15, of Oak Lawn, suffers from Charcot Marie Tooth (CMT),

a neuromuscular disease that is estimated to affect 2.6 million

people worldwide. It is commonly inherited and misdiagnosed. The

disease causes a gradual loss in the use of one's extremities.

Some 55 attendees walked a one-mile course at Lake , Palos

Heights, during the day. Later, about 150 people attended Tyler's

benefit dinner and raffle at O'Connor's Pub and Grill in Chicago

Ridge. Proceeds from the benefit helped fund the Strategy to

Accelerate Research initiative.

" Last year we just did the walk. This year we decided to add the

benefit dinner, and the dinner is bringing in more people than what

we anticipated, " said Dale , Tyler's mother.

The family began the benefit as a way to promote awareness

about the disease.

" Our son was diagnosed four years ago. Being parents, we want to do

all that we can to create awareness. We want to help Tyler and

everyone else that has the disease, " Dale said.

In addition, Dale has become more aware of other debilitating

diseases.

" Our hearts go out (further) to people who suffer from diseases which

are more serious than Tyler's, " said Dale . " However, we do not

want Tyler to get worse because the disease is a progressive one.

Tyler is strong, and he keeps up with his athletic friends. "

Despite being afflicted with CMT, Tyler's family believes that the

disease has only made them closer.

" It has affected our family in a positive way. It has drawn us much

closer, and we love each other so much, " said Dale .

Tyler's great-aunt, Donna Wann, agreed.

" This has made us aware of just how lucky we are. We have a large

family, which is relatively healthy. We need to pull together, " said

Wann.

Information provided by STAR estimates that a cure for CMT will be

discovered within the next three to five years.

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