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Local 13-Year-Old Joins Fight Against Chiari

After being personally affected by the neurological disorder, Megan Killpatrick is organizing her second Conquer Chiari walk.

When some 13-year-olds get home from school they have a snack, maybe walk the dog and then probably watch TV.

When student Megan Killpatrick gets home she may do those things too—but she also tries to find corporate sponsors to help her in her fight to conquer Chiari.

Megan was diagnosed with Chiari, a neurological disorder that affects 300,000 people in the U.S., when she was 7.

“What happens is part of the brain comes out of your skull a little bit and it crowds up the back of you head and puts pressure on your spine and brain,” Megan said. “It causes pain and nerve damage.”

Megan’s mom, Cheryl Killpatrick, said Megan was diagnosed with scoliosis when she was 7 and that eventually led to the diagnosis of Chiari.

“They believe it is congenital, meaning she had it from the time she was born, but we didn’t discover it until she was 7,” Killpatrick said. “We recognized the scoliosis and discovered it was caused by the Chiari. Most people don’t discover it until they are adults. Megan was lucky we discovered it early.”

Those who suffer from Chiari, which is not curable, can experience severe headaches and in extreme cases lose function in their arms and legs.

Megan said while her symptoms are not as bad now as they were when she was diagnosed, she does have to wear a back brace because of the scoliosis. She also gets headaches when she coughs, sneezes or yells, and said she sometimes gets a pain all over her body.

“A lot of people can’t do a lot of stuff that I can,” Megan said. “Some adults can’t work because of constant pain, but it hasn’t been as bad for me. I play soccer and play lacrosse.”

Killpatick added that while Megan can play soccer, she is not allowed to head the ball.

“Mostly, she can do everything, which makes her a good spokesperson for others,” Killpatrick said. “She does great in school—some people have trouble with all the pain, but she does great.”

Megan has become an advocate for the fight to cure Chiari. With help from her family, she is organizing her second Conquer Chiari walk, which will be held at on Sept. 22.

“Four years ago we found out about this Conquer Chiari organization but the closet walk was in Leesburg, VA,” Megan said. “We attended that walk 2 years ago and the head of the organization asked us to start a walk here in Maryland. Last year, we started the first one and we are just doing it again.”

Last year, more than 400 people attended the Conquer Chiari walk and they raised $25,000. The funds raised go to the Conquer Chiari Foundation, which funds research for the disease.

This year, Megan said she wants to have 500 people attend the walk and raise more money than last year. She also said she wants to have 50 people with Chiari in attendance—last year they had 25.

“Even though the condition hasn’t been that bad for me, you hear all these stories where people can’t do anything and stay in their house and it ruins their lives,” Megan said. “They can’t live the lives they want to live and it made me really sad. So, I feel like I had to do something—that’s why I wanted to start the walk.”

Megan said her whole family gets involved in planning the walk, and last year she had several friends participate. Killpatrick added that they couldn’t do it without the help they receive from family, friends and neighbors.

Even with all the planning and time that goes into the walk, Megan said the reason why people should get involved is simple.

“It will mean a lot to a lot of people with Chiari,” she said.

Those interested in walking can register online. The walk will take place on Sept. 22 at Kinder Farm Park at 9 a.m. Registration will begin at 8 a.m., but those interested are encouraged to register beforehand.

Debi Vincent September 06, 2012 at 11:18 AM
I had the opportunity to meet Megan at the walk last year and she is one of the bravest, most mature young lady I've ever met. Thanks for being such an inspiration to others Megan!
Scott Kelch September 06, 2012 at 02:00 PM
Megan is amazing! I also have Chiari and met her at last years walk where I also played the National Anthem on my trumpet (my first public performance after taking several off due to the condition). I very much look forward to seeing this awesome young lady and performing again this year. Thanks for what you do Megan!

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