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Pine Brook Boy's Illness Identified After 11 Years

Family learns more about son's disease through genome contest at Boston Children's Hospital.

After 11 years, the family of Adam Foye finally has some answers about the muscular disease affecting the 11-year-old.

Time Magazine wrote about Foye and his parents, Sarah Foye and Patrick Foye, last week. According to Time, researchers, who participated in a genome and exome identification contest through Boston Children's Hospital, have determined that changes in the gene titin have caused muscle weakness in Foye that leaves him tired after typically non-exhausting activities.

Read the full story from Time Magazine here.

Foye was first diagnosed with Centronuclear Myopathy when he was an infant, but the exact form of the disease, of which there are many, was unknown for years. With a more specific diagnosis, physicians would have an easier time developing and prescribing treatment, if such is available.

Foye and his family live in Pine Brook, where Foye's parents bought a house after getting married more than 13 years ago. Sarah Foye has found Montville to be a good home for her son and family.

“We’ve found the community to be extremely supportive,” she told Patch in September of 2011.

The Foyes have given back as well, not only to the Montville community, but to the medical organizations that help fund research to find cures for diseases like Foye's and others'. Foye, himself, volunteers for the Muscular Dystrophy Association through a program called Little Voices in which he calls donors and thanks them for their contributions. The Foyes are also working with several organizations to build an international registry, The Congenital Muscle Disease International Registry, that would allow researchers and patients to more easily exchange information and communicate.

In his free time, Foye is a swimmer and draws.

Kon Joo Lee November 20, 2012 at 01:20 AM
Ther are 3 water veinss flow under the Adam's bed. The water vein may flow from head to leg...So the magnetic wave may disrupt the gene expression and a disease symptom..If hes bed move right or left to 3feet, he can escape from the water vein wave. I think he may be healty...

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