MDA seeks to ease family burden of CMT

[Guest guest]

MDA seeks to ease burden of those with the disease

by Philip D. Brown

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The family of and Debbie in Hamlet have found a new appreciation for

life, like playing with a turtle, through the diagnosis of both of their

daughters with a degenerative, genetic condition called Charcot-Marie-Tooth

Disease. The debilitating condition hinders the use of their legs and their

coordination. The Muscular Dystrophy Association will host a fundraiser at

Comfort Suites in Rockingham July 22 from 9 a.m. to 3 p.m. Pictured are (from

left) 9-year-old , 16-year-old and their mother Debbie.

" It was her walking, " her mother Debbie said. " Her gait seemed unsteady, but the

doctors always told us it was just growing pains. Along about sixth grade, she

really started having problems with her legs in P.E. class. We started to

realize it wasn't just growing pains. "

As the years progressed, so did her condition, and the now 16-year-old contended

with bouts of what she describes as " I would be walking and just stop, " or

" Sometimes I'd walk into things that weren't in my path. "

In high school, she even fainted and fell down two flights of stairs.

was diagnosed with Charcot-Marie-Tooth (CMT) Disease nearly a year ago.

To diagnose her, doctors at Duke had to administer a painful test that involved

penetrating her leg muscles with needles.

After her family saw the pain she went through, they had her 9-year-old sister

's genetic material tested against her sister's, and discovered she has

the same condition.

CMT is a neurological disorder that causes damage to the nerves that connect the

brain and spinal cord to the muscles and sensory organs, according the Muscular

Dystrophy Association (MDA). In CMT, nerve damage can cause muscles weakness,

muscle wasting and decreased sensation in the feet, lower legs, forearms and

hands.

More than a million people in the United States are affected by some form of

neuromuscular disease, and about 40 percent of them, like and ,

are under the age of 18. All of these diseases are progressive in nature, and

all result in muscle weakness and fatigue.

" They think it came from my side of the family, " Debbie said. " Growing up, I

should've been able to see the signs. My uncle said I would have to use leg

braces, but nobody ever realized how serious it was. Finally, when I got older

and realized I couldn't wear high heels, I still didn't realize how serious it

was. "

For the disease causes fatigue, drowsiness and sleeplessness, in

addition to the lack of coordination with her legs and feet. She could never

curl her toes since birth.

" My feet point inward when I'm trying to walk and sometimes I get really bad

cramps in my feet and right here, " said pointing to the top of her

thigh.

The MDA is sponsoring a " Lock-Up " fundraising event at the Comfort Suites in

Rockingham July 22 to benefit the family and others in the region that are

affected by conditions akin to Muscular Dystrophy. The event will last from 9

a.m. to 3 p.m.

A fundraiser held in Rockingham last year raised nearly $40,000.

" Basically, the main focus of these events are to raise awareness about MD, " MDA

Program Coordinator Becca Monger said. " We do this in several communities across

North and South Carolina, and we have such a great response from business

leaders and community leaders. People genuinely want to help these children. "

MDA is seared in most people's minds from the telethons featuring appeals by the

late Jerry to help " Jerry's Kids. " Jerry's Kids are children who suffer

from these types of conditions. The late Ed McMahon also led major public

awareness campaigns for people who suffer from these conditions.

Monger explained the group started in the late-1940's when parents of children

with these types of conditions banded together. She said an important aspect of

the groups fundraising is that all money raised locally stays in that local

area, so the money from the July 22 event will help the s and other

families in Rockingham, Hamlet and the outlying areas.

" We provide funding for a couple of different things, " she said. " We provide

funds for research, support group sessions, clinics, summer camps and we help

families cover physician expenses and pay so the children can go to physical

therapists. "

The theme of this event is the summer camps, so the money raised will pay for

afflicted children to attend.

Unfortunately, she explained, the summer camps have been canceled due to swine

flu outbreaks this summer, but the money will be retained for future years to

send children to camp.

The average cost per child is $800 for the summer camp. The expense, however, is

covered through private donations at fundraisers like the one slated to take

place in Rockingham.

Some of the ways CMT is treated in physical therapy sessions include stretching,

range of motion exercises and safety training.

For Debbie and her husband , their daughters' condition has caused severe

financial stress.

" There have been months when we had to go to Duke three or four times, " she

said. " You're talking about time off work, gas and travel on top of medical

expenses. "

is self-employed in the home renovation business, so he has no

employer-provided health insurance plan.

In addition to financial and emotional support, Monger said the MDA also offers

loaner items like wheelchairs and leg braces to children whose parents can't

afford the equipment.

" With CMT, you trip a lot, you stumble a lot and you fall, but we try to help

the girls get up, " Debbie said. " Really, we try to make the best of what God has

given us. We're just thankful we have life, and we have very supportive friends

and family. That helps — it's hard to make it through something like this

without support. "