Out of the Sun: ; N.Y. Girl with Rare Skin Disease Inspires Parents to Create Summer Camp and Fight for Cure
Sunday Gazette-Mail › March 07, 2005
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Summary
CLAVERACK, N.Y. - Caren and Dan Mahar can't stop the sun from shining to save their 12-year-old daughter, but they've done everything short of it.
Since finding Katie has xeroderma pigmentosum, a rare genetic disorder that turns sunlight to poison, they created a shady world for her with window tint, hats and sunscreen. Katie plays by moonlight.See the full content of this document
Extract
Out of the Sun: ; N.Y. Girl with Rare Skin Disease Inspires Parents to Create Summer Camp and Fight for Cure
But the Hudson Valley couple have also shucked their comfortable suburban lives to run a charity that helps kids like Katie, raising $1.5 million for research and for a special camp for children who can't go out in the sun.
When the Mahars - like other parents of...See the full content of this document
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