Article on Chance

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Here is the article on Chance. It also accompanied a big picture of him

talking to the doctor.........

Slowed, Not Stopped

Portage boy battles rare nerve disorder

by Amy Lavalley

staff writer

Chance Culp-Rigg can tell you all about the nerve disorder he lives

with.

Talking a mile a minute and bouncing around his mom's Portage living

room, the blonde 6-year-old with blue eyes seems like a normal kid.

And he is, except for Charcot-Marie-Tooth disease, a progressive

disorder that already is starting to rob Chance of his motor skills.

" The first day I noticed my CMT was bad. I couldnt walk. It was almost

like someone chopped my feet off, " said Chance, a kindergartner at

Crismon Elemetary School in Portage.

Doctors estimate one in 2,500 people hae CMT, which is inherited. That

makes it one of the most common degenerative nerve diseases, though many

people do not know they have it, said Dr. Daksha Vyas, a neurologist who

practices in Merrillville and .

" It's possible some people may put up with the symptoms and may not even

see a doctor, " Vyas said. She recently saw Chance and has treated

several other patients with the disease.

Symptoms include foot and hand deformities, numbness, weakness and pain

in the extremities, and a progressive loss of motor skills and muscle

strengh.

" You lose normal use of the feet, legs, hands and arms as the nerves to

the extremities slowly degenerate, " Vyas said.

Though CMT sometimes affects breathing ability, it is not typically

fatal and does not shorten life spans.

There is no treatment for the disease, other than physical therapy, leg

braces and, sometimes, corrective surgery.

Doctors diagnosed Chance's grandmother with CMT about six years ago,

after she had back problems because of a fall.

Chance's mother, Amy Culp, also has symptoms of the disease, including

curvature of the spine, though she has not been diagnosed.

Culp said doctors diagnosed her son with the disease through blood tests

almost two years ago, after he had a seizure. The seizure was not

related to the CMT.

Chance's symptoms became more noticeable in recent weeks. About a month

ago, his legs hurt so much he could not walk.

He cannot run or walk as fast as his friends, his mom said, and he has

trouble writing, tying his shoes and with other fine motor skills, as is

typical in people with CMT. Culp worries about other kids teasing Chance

because he cannot always keep up with them at school.

Though his condition will continue to worsen, Vyas said CMT progresses

at different rates in each patient. The progression of the disease

varies from patient to patient, so there is no way to predict how

severely it will limit Chance's mobility.

CMT will not, hoever, affect Chance's intellect.

" Mentally, he should be pretty capable of doing whatever he wants to, "

Vyas said.

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ABOUT CMT DISEASE

-Charcot-Marie-Tooth disease was discovered in 1886 by three physicians,

Jean-Marie Charcot, Pierre Mare, and Henry Tooth. -It affects

approximately 150,000 Americans..... -A high-arched foot is one of the

first signs of the disorder. -The loss os nerve function in the

extremities also leads to sensory loss. The ability to distinguish hot

and cold is diminished, as well as the sense of touch.

Source: Charcot-Marie-Tooth Association home page,

www.charcot-marie-tooth.org

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amy

http://community.webtv.net/amy913/FromtheHeart