Girl with disorder lives in world without sun

updated 3:29 p.m. ET March 7, 2005

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.

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 sick children — asked themselves ‘What can we do?’ their answer was exceptional. The former mail carrier and stay-at-home mom not only are trying to coax along a lifesaving cure, but are helping families around the world with sun-sensitive children. They’re raising funds, awareness and spirits with a special camp for kids.

Jim Mcknight / AP Katie Mahar walks down the hallway of Taconic Hills School on Feb. 9 in Claverack, N.Y., completely covered so that no unnecessary light can reach her skin.

“A lot of times I’m just petrified,” Dan Mahar admitted, standing by the indoor pool at the camp they built. “I’m not the man who’s best qualified for this job. But I’m the one who happens to have it.”

The camp was started, in part, so Katie wouldn’t feel isolated. It has placed the Mahars at the nexus of XP families all over. Neil Johnson, whose 18-year-old daughter Alixe is a camp regular, doesn’t believe she would be doing as well physically or mentally without the Mahars, who have become close friends.

“I’ve got a kid with XP, but I didn’t drop everything to pursue a foundation in search of a cure. I still have my 401k, I still have a job. I still have my benefits,” said Johnson, of Greensboro, N.C. “Those two chucked all that with a vision.”

Katie is the fourth of the Mahars’ five children, a seventh grader with long chestnut hair and an unguarded laugh. She likes Spanish class, phoning friends and watching “Seventh Heaven” on TV.

Increased risk of cancer
But like others with the disorder, exposure to sunlight or other strong sources of ultraviolet radiation increases her cancer risk significantly. Many people with XP are plagued by tumors and die young, though with early diagnosis and aggressive shielding, sufferers can live at least into middle age.

The Mahars discovered Katie had a problem when she was a baby; a brief stay under a shade tree left her with painful blisters. Since then, the Mahars have essentially structured their lives to keep Katie out of strong light. Their home is a dimly lit cocoon where windows are tinted and bright fluorescent lights are banished.

Katie goes to school like her siblings. But she is slathered with sun screen and meets the morning bus wearing a hood, sunglasses, gloves and a tinted visor. The protective gear stays on until she gets to a classroom.

“If someone lifts up the shade, my friends will say, ‘Don’t do that! Don’t you know Katie’s in the room?”’ Katie said.

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