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Walk aims to raise awareness for rare disease

DULUTH - Ainsley Higgins laughed and squealed in delight Thursday afternoon as she watched "Dora the Explorer," typical kid responses to a favorite cartoon television show.

But Ainsley isn't a typical 4-year-old.

With a rare, incurable disease that has resulted in seizures, gastrointestinal problems, temperature fluctuations, fatigue, a compromised immune system and developmental disabilities, Ainsley leads a life quite different from that of a healthy child.

Last year, she spent 17 weeks in the hospital - five of those weeks in an intensive care unit. So far this year, Ainsley's hospital stays have been limited to just two weeks, a vast improvement.

Still, due to gastrointestinal issues in which her digestive system can't handle the adequate daily amount of calories she needs, Ainsley requires total parenteral nutrition - all her nutrition comes through an IV into her bloodstream, about 70 ounces of fluid a day.

Due to ongoing fatigue, Ainsley sleeps about 13 to 14 hours each night and takes a one- to two-hour nap during the day.

The disease behind Ainsley's symptoms?

"Most people have no idea what it is," her mother, Lisa Higgins, said of mitochondrial disease, the condition her daughter was diagnosed with at just 17 months old that affects her cells. "You say it and they look at you with a blank stare."

Higgins hopes to decrease the number of blank stares she gets through the second annual All Aboard for a Cure one-mile walk to raise awareness of mitochondrial disease.

"I think that's the first step to trying to find treatments and a cure," said Higgins, who started the local walk after attending a similar event in Cleveland, Ohio. The first walk, held in March 2008, drew more than 500 participants and raised more than $50,000 for the United Mitochondrial Disease Foundation.

This year's event will kick off at 9:30 a.m. with a mile-long, handicap-accessible walk through the streets of historic Norcross followed by free refreshments and food, games and prizes for children of all abilities, face painting, musical activities and raffles until 12:30 p.m. in Thrasher Park.

All proceeds from registrations, donations and raffle tickets will benefit the United Mitochondrial Disease Foundation.

Team Ainsley - more than 70 people strong - will be out in force for Saturday's walk, as well as teams supporting other children with mitochondrial disease.

"Most importantly for me is to have a day where there is so much fun for families with kids with mitochondrial disease," Higgins said. "Free of doctors and therapies, kids can actually be kids."