Parents Seek Cure for Daughter’s Shady World

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 learning that Katie has xeroderma pigmentosum, or XP, a rare genetic disorder that turns sunlight to poison, they have 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 such as 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 asked themselves, “What can we do?” their answer was exceptional. The former postal carrier and stay-at-home mom not only are trying to coax along a lifesaving cure, but also are helping families around the world with sun-sensitive children. They’re raising funds, awareness and spirits with the special camp for kids.

“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 that Katie wouldn’t feel isolated. It has placed the Mahars at the nexus of XP families all over.

Neil Johnson, whose daughter Alixe, 18, is a camp regular, doesn’t believe that 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 401(k). 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.

But as for 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, although with early diagnosis and aggressive shielding, sufferers can live at least into middle age.

The Mahars discovered that 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 illuminated cocoon where windows are tinted and bright fluorescent lights are banned.

Katie goes to school like her siblings. But she is slathered with sunscreen 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.

The couple realized that light-shielding strategies, although necessary, were not enough. What they really needed was a cure.

Overcoming their desire for privacy, the couple turned a spotlight on their lives to raise research money. A stream of reporters tramped through their house.

The family sold baked goods outside Kmart for a year to raise $10,000. Caren Mahar recalls proudly bringing the check to scientists -- and being told that she had collected the research equivalent of lunch money.

“They laughed in my face,” she said. “I can’t explain how sick and hurt I felt.”

Undaunted, the Mahars pressed on with the Xeroderma Pigmentosum Society and its dual mission of finding a cure and supporting families. Days are now consumed with fundraising and networking. Caren Mahar is the calm voice on the phone giving advice on window tinting to shellshocked parents grappling with XP.

And when she talks to scientists now, it’s often as a speaker at symposiums.

For a time, the Mahars tried to cater to Katie’s needs while living a normal suburban life. It was a bumpy ride. Caren recalls people parking nearby to watch Katie play in the backyard at night, “like a freak show,” she said.

And although a night camp in their yard did bring kids with light sensitivity together, it also meant a llama wandering into their kitchen from the petting zoo in the garage.

“It got to the point where I couldn’t focus anymore,” Dan Mahar said. “It just had to be all or nothing.” He quit his postal job so the couple could devote themselves full-time to the fledgling organization, with Caren drawing a salary from it.

A couple who read about the Mahars sold them a cozy house in the woods. Uprooting all their kids was tough, but Dan Mahar told them that they had chances to succeed in life that Katie didn’t, and he needed to make things equal.

Since 2003, the rural spread has been home to Camp Sundown, tucked among rock outcroppings and tall pines behind the Mahars’ home. For a few weeks each summer and one weekend each fall, campers spend sunlight hours playing games and splashing around a pool inside the sprawling main building. After dark, they sing around the campfire or go on field trips to ride go-carts or take a cruise around Manhattan.

Dan Mahar admits that leaving the security of their old life was scary. But there are upsides. Katie’s siblings have cottoned to country life. The Mahars are constantly amazed that strangers are so generous with time, money and materials. They say their life is more spiritual now.

There is still no cure for XP, but Dan Mahar harbors hope. He likes to think that Katie will take a nostalgic walk through her old camp one day.

“I want Katie to bring her granddaughter back and say, ‘This is where I carved my initials in a tree.’ ”