Exeter's Snelling ( has CMT) is determined to make a run

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Exeter's Snelling is determined to make a run

By Don for Reading Eagle

http://www.readingeagle.com/article.aspx?id=109769

Snelling is upset. It's one of Exeter's early season cross

country meets, and the determined freshman can't finish the 3.1-mile

race.

No one seems too concerned. No one dubs the try a failure.

Well, no one except Snelling.

He leaves the meet frustrated and disappointed. Deanne Snelling tries

to reason with her son, telling him that maybe he won't be able to

finish every race. 's response: If I'm not helping the team, why

am I there?

" He doesn't take well to not doing well, " Deanne said. " He just wants

to do what everybody else does. "

For Snelling, that's the daily battle: leading a normal life.

is one of an estimated 115,000 Americans who live with a

neurological disease called Charcot-Marie-Tooth, or CMT. The disease

attacks the muscles in the hands and legs, weakening the limbs.

CMT is not fatal, though it does continue to attack muscles

throughout the sufferer's life. Symptoms tend to spike sharply during

adolescent years before leveling off in early adulthood. It's passed

genetically; Snelling's mother has it, along with an uncle,

grandmother and two cousins.

Snelling, who was diagnosed in March 2003, experiences weakness in

his legs and hands. His hands sometimes shake, making it hard for him

to write. His feet have begun to angle downward, a common CMT symptom.

" There are some days where I just forget I have it, hanging with

friends, " Snelling said. " You learn to live with it. It's an uphill

fight. "

He might have CMT, but the disease doesn't have him.

Snelling is quite active in school. He's an honor-roll student

involved in Exeter's marching band and choir. He also plays piano,

which helps his finger strength.

Athletically, Snelling competed in soccer until back-to-back

concussions in seventh grade forced him to give up the sport. He

swims, bikes, and this fall decided to give cross country a try.

Though his parents, both of whom are teachers, gave him their

blessing to run cross country, Snelling got some resistance from his

doctors.

" There was: 'OK, but you're not going to be able to,' " Snelling

recounted. " They're still surprised that I'm able to do it. Whenever

I tell anyone, they're always surprised. "

He ran in five meets this fall, finishing two, before a hip injury

not related to CMT forced him to the sidelines.

Snelling said he's focused on running in the spring for the track

team and continuing his participation in cross country next fall. He

also plans to compete in a triathlon - running, biking and swimming -

in February.

" He's a hard worker, " Eagles coach Todd Witkowski said. " I treat him

as normal as I would the rest of the team because it wouldn't make

him feel better not to, and that's what he wants anyway. "

Snelling is uncomfortable with sympathy and preferential treatment,

so he's happy that his coaches and teammates have welcomed him like

any other freshman runner. He's also found a comfort zone with his

circle of understanding friends.

" He's one of the hardest workers I know, " said freshman teammate Nick

Denunzio, who has been pals with Snelling since the two were in fifth

grade together. " He doesn't like people to know that he has CMT. But

getting to know him, you'd never know that he has it. "

For one week each summer Snelling attends a Muscular Dystrophy

Association (MDA) camp. It's one of the few times where he doesn't

have to worry about fitting in, where he doesn't have to feel ashamed

about being unable to perform ordinary tasks such as opening a soda

can.

" He'll tell you that's his favorite week of the summer, " Deanne said.

The camp also exposes Snelling to other neuromuscular disease

sufferers, many of whom have prognoses that are much bleaker. Though

's legs and hands will grow weaker in his later years, and

though he might eventually end up in a wheelchair, he often says he's

lucky that he has only CMT.

" Anything that's fatal is really heart wrenching, " Snelling said. " I

know a lot of my friends are going to be dead before their 30s. "

Driven, competitive and mature beyond his years, Snelling carries an

energetic appreciation for life. He's already focused on a career in

law or engineering, and he hopes to work his way into the University

of Pennsylvania.

As for cross country, there's some disappointment in Snelling's voice

when he talks about his freshman season, as if he can't wait for his

hip to heal so he can get back to running.

" I'm going to stay with it, " he said.

Snelling already has lasted longer in sports than any of his

relatives who have CMT. He might not make it much further, not with

the symptoms of the disease expected to get worse each year.

But Snelling is determined to keep going, determined to be just like

any other high school runner. He'll always be a little different,

however, because there aren't many freshmen out there as driven as he

is.

" One of the things that amazes us through all this is still

remains confident, " Deanne said. " just has an incredible

confidence in himself that he can do things.

" I think that's going to get him far. "

It already has.