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.
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.
Don't miss these Health stories
More women opting for preventive mastectomy - but should they be?
Rates of women who are opting for preventive mastectomies, such as Angeline Jolie, have increased by an estimated 50 percent in recent years, experts say. But many doctors are puzzled because the operation doesn't carry a 100 percent guarantee, it's major surgery -- and women have other options, from a once-a-day pill to careful monitoring.
- Larry Page's damaged vocal cords: Treatment comes with trade-offs
- Report questioning salt guidelines riles heart experts
- CDC: 2012 was deadliest year for West Nile in US
- What stresses moms most? Themselves, survey says
- More women opting for preventive mastectomy - but should they be?
“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.
Search for a cure
The couple realized that light-shielding strategies, though 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 of Kmart for a year to raise $10,000. Caren recalls proudly bringing the check to scientists — and being told she collected the medical research equivalent of lunch money.
“They laughed in my face,” Caren says. “I can’t explain how sick and hurt I felt.”
Undaunted, Caren and Dan pressed on with the Xeroderma Pigmentosum Society and its dual mission of finding a cure and supporting families. Days are now consumed with fund-raising and networking. Caren 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 back yard at night. “Like a freak show,” she said.
And while a night camp in their yard did indeed 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 said. “It just had to be all or nothing.”
The birth of Camp Sundown
Dan 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 told them 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 Mahar’s 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 admits 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 still harbors hope. He likes to think 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.”’
© 2013 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.