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Family Seeks Help To Treat Son's Devastating Disease

Condition Shuts Down Boy's Nervous System

POSTED: 2:05 pm EST December 28, 2005

Zach Couture was a healthy 9-year-old a few months ago, but now, he is barely able to walk and needs a costly surgical procedure to slow down his life-threatening disease.

Seven weeks ago, Zach's father, Carl Couture, noticed that his son could no longer hear. Audiologists said that his hearing was fine, but they found something far more dangerous.

"There's two fatty acids that his body can't metabolize," Carl Couture said. "These fatty acids make the myelin sheathing around his nerves soluble to his body, so basically, the coating on his nerves and brain are being washed away."

The disease is called adrenoleukodystrophy, or ALD. Zach went from playing baseball with friends to barely being able to walk while his nervous system began shutting down.

"From diagnosis to now is just over seven weeks, and during that time, we've watched him deteriorate rapidly," said Scott Hobdon, Zach's grandfather.

When doctors indicated that a bone marrow transplant might help, the family learned that their insurance provider might not cover the $250,000 procedure. Zach and his father traveled to the University of Minnesota to explore the possibility of surgery, while his grandparents spread the word that help is needed.

"Every time we go to the doctor, they want to know if they're going to fix his ears, but they can't," said Louise Hobdon, Zach's grandmother. "But they can slow the progression with a transplant, so that's what we're going to do."

A fund has been established to help the family cover the costs of treatment. Anyone can give to the Carl Couture Fund to benefit his son at any Citizen's Bank branch.

The family is also posting updates and providing a place to donate on a Web site, Zach's Spirit.com.

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