York County family “raises the roof” to promote rare disease awareness

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A York County family is in desperate need of help after their young daughter was diagnosed with a rare brain disorder.

Five-year-old Emilee Heilman suffers from a fatal brain disorder called Alexander's disease. Bound by a wheel chair, she has limited speech and mobility.

"She can communicate with us, pointing, through her eyes," said Jennifer Heilman, Emilee's mother.

Emilee will need round-the-clock care for the rest of her life. Most recently, another setback has affected the family. Emilee was diagnosed with Kawasaki disease, a rare condition that swells the blood vessels.

"Horrible. Mother's worst nightmare. It's something that I never thought I'd go through. But her smile makes me get through the days," added Heilman.

Emilee's mom says they could no longer stay in their three-story condo in West Manchester Township because the space didn't accommodate her daughter's needs. So Emilee's grandparents jumped into action.

"It means everything," said Edward Heltzel.

Emilee's grandfather, Edward Heltzel, is a contractor. He designed an extension on his house, complete with three bedrooms and an elevator. They called the project: "Raisin' the Roof for Emilee." It's cost the grandparents at least $125,000 and their contribution didn't end there.

Emilee's grandparents created and paid for, their own version of Disney World right in their own backyard. They call it, "Em's World." A remodeled backyard with a swing set, play house and rubber playground surfacing, so Emilee can crawl around. Her parents say it's the only place where Emily feels she can be a normal kid.

The Heilmans are expected to move into their new home by Thanksgiving. "It'll be a good day, be a great day," added Heltzel. Just in time for Emilee's sixth birthday.

The family is raising awareness of the disease through a campaign called -- "Love, Live Hope. Prayers for Emilee," in hopes of finding a cure. To find out how you can help, click on the following link: http://prayers4emilee.com/



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