DURHAM: Young Duke patient with rare disease needs your help - WNCN: News, Weather

Young Duke patient with rare disease needs your help

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Haley Hayes, of Virginia, was diagnosed with Pompe disease, a rare muscular disease, when she was six months old. Haley Hayes, of Virginia, was diagnosed with Pompe disease, a rare muscular disease, when she was six months old.
DURHAM, N.C. -

A young Duke Children’s Hospital patient could use your help to make living life with a rare muscular disease a little bit easier.

Haley Hayes, of Virginia, was diagnosed with Pompe disease when she was six months old. The disease is a rare, inherited disorder that causes muscle and nerve damage.

Prior to 2006, the disease was often considered a fatal disorder because it disables the heart and skeletal muscles.

Two months prior to Haley’s diagnosis, the family learned about a new treatment developed by doctors at Duke. They created a new enzyme treatment that could help patients like Haley who suffer from Pompe disease.

Haley’s mother, Krystal, started bringing her daughter to Duke for the enzyme replacement therapy. Now she gets treatment every week.

Because the disease affects the muscles, Haley uses a wheelchair to get around. In fact, Haley has two wheelchairs, one that’s powered to make getting around easier.

But the powered wheelchair does not fit in the family’s van, so Haley has to be lifted in and out of her chair and in and out of her car seat each time they need to go somewhere.

“We don't take her power chair many places because it takes a lot to get it in and out,” Krystal said.

Krystal added that if Haley were to have a mobility accessible vehicle, she could get in and out of the vehicle all on her own.

That’s when Krystal decided to enter a contest offered by the National Mobility Equipment Dealers Association to win a mobility accessible vehicle for her daughter.

NMEDA is a non-profit organization dedicated to expanding mobility options for people with disabilities.

Krystal, Haley, and the help of a few others, created and posted Haley’s story on YouTube. Now the family needs your help to win. To vote for Haley and to help her win a mobility accessible vehicle, click here.

Copyright 2014 WNCN. All rights reserved.


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