Upstate Boy With Rare Disorder Can't Go Out In Sun

For 8 year old Mathew Mayhorn much of his life is spent looking out of windows watching his brother and friends play wishing the sun would go down so he can join them.His mother Crystal Anders says, "Sometimes he'll say mama when is the sun going down when is the sun going down."Mathew suffers from an extremely rare genetic disorder called Trichothiodystrophy.

By: Carrie Davis | News Channel 7
Published: December 08, 2008

For 8 year old Mathew Mayhorn much of his life is spent looking out of windows watching his brother and friends play wishing the sun would go down so he can join them.

His mother Crystal Anders says, "Sometimes he'll say mama when is the sun going down when is the sun going down."

Mathew suffers from an extremely rare genetic disorder called Trichothiodystrophy. There are only 20 known cases in the United States. His mother says since he was an infant he was in and out of the hospital dozens of times and doctors couldn't figure out what was wrong.

Anders says, "They got a muscle and skin biopsy and sent it to the Netherlands to Dr. Gasper's lab and they found out there."

Crystal Anders says because its so rare doctors can't do much for her son. There's no treatment except to keep mathew in the dark.

Anders says, "It destroys his DNA. The sunlight UV rays anything destroys his DNA."

He doesn't have enough white matter in his brain which breaks down his nervous system and weakens his immune system. He loses his hair, his skin can get scaly and his muscles hurt constantly.
His mother says, some people with TTD can live to be in their 30's but not most.

Anders says, "Only god knows what his future is there's so few cases of it that they just don't really know. You never thought that something like the sun would take your child's life."

Crystal wants to make his time here the best it can be knowing that when he does leave home for heaven there will be no shortage of light shining on him.