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Letter to the Editor: Story sheds light on life in shadows

Tuesday, September 16, 2008

To the editor:

I am writing in regard to the Sept. 14 story about Graycen Beardslee and her genetic condition that required her to "live in the shadows" by Lindy Bavolek.

We met Graycen and her mom at Camp Sundown, a unique night-camp program free to families with children who can never be in daylight. Graycen is a delightful, normal young girl who, like all our XP (xeroderma pigmentosum) campers, only wants to fit in with her peers. This beautiful story is an excellent example of how well a school system, with the right caring parents and caring staff, is able to serve a special child in a ultraviolet-safe environment.

Congratulations to Graycen, her family and the school for making the environment possible for her, and congratulations to you as a valuable news source for raising awareness about such a rare condition.

CAREN MAHAR, Executive Director, XP Society, Craryville, N.Y.