Re: Chances story

[Guest guest]

Today is the first day of school for Adam. I was going to print out the

article about Chance so the new teacher could read it. I can't find it in my

computer. Does anyone have a copy?

jenny

[Guest guest]

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 couldn't walk. It was almost like

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

mentary School in Portage.

Doctors estimate one in 2,500 people have 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 strength.

" 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 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, however, affect Chance's intellect. " Mentally, he should be

pretty capable of doing whatever he wants to, " Vyas said.

About CMT disease: Source- Charcot-Marie-Tooth Association home page

www.charcot-marie-tooth.org

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

Jean-Marie Charcot, Pierre Marie, and Henry Tooth.

It affects approximately 150,000 Americans.

A high arched foot is one of the first symptoms of the disorder.

The loss of 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.

Caption for the photo: Six-year-old Chase CuIp-Rigg gives an animated account

of his medical history to Dr. Daksha Vyas, his neurologist. Chase suffers

from a rare nerve disease.

[Guest guest]

Thank you Kat.

I am so glad to have his story. I started to mention CMT to the new teacher

and her eyes glazed over as if to say " Oh not this on the first day " Maybe

she will be more willing to read Chances story.