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Child of Night

By , | Posted - Apr. 24, 2003 at 10:24 p.m.



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Ed Yeates reporting Almost 4-years ago we introduced you to a little girl with an extemely rare disease. A disease which makes even a "hint" of sunlight dangerous.

Something remarkable has happened to this child and her family in the meantime, something we had to see for ourselves.

This part of the day, when night falls, was little Paris Feltner's playground four years ago.

But not anymore. Come with us to St. George and see why this five year old.

Four years ago, Paris Feltner liked the darkness, and needed darkness, because with her rare disease called Xeroderma Pigmentosum, that's the only time she felt really safe.

But wait. Is this Paris outside now, playing with her friends under blue skies?

PARIS FELTNER: "I SWING. I JUMP ON THE TRAMPOLINE. I SLIDE. I DIG IN THE DIRT."

Look closer! Sky and clouds are actually painted on the walls and ceiling of a huge INDOOR playground - attached to the back of the Feltner home. The people in Washington and St George helped build it so Paris can play with her friends in daylight. Since other lights too can damage her skin, fluorescent fixtures on the ceiling have special filters. And..

"ED YEATES: LIKE ALL THE WINDOWS IN THE REST OF THE HOUSE, THIS ONE WINDOW IN THE PLAYROOM IS ALSO TINTED TO PROTECT PARIS FROM THE SUN."

But it's not just the Feltner home. Something has happened to ALL the houses in the neighborhood.

JENNIFER FELTNER, PARIS' MOTHER: "ALL OF THEM HAVE SAFE HOUSES FOR HER TO GO TO. THEY'VE TINTED THEIR WINDOWS SO THEY CAN GO AND PLAY AT THEIR HOUSE ALSO."

And at Washington Elementary, the school board has decided to tint every single window and door in the school before Paris begins Kindergarten here next year.

BURKE STAHELI / PRINCIPAL, WASHINGTON ELEMENTARY: "THIS IS MONEY WELL SPENT. THIS IS A LITTLE GIRL AND A FAMILY THAT BRING - I MEAN - WHAT DO THEY SAY - PRICELESS THINGS TO OUR SCHOOL." TODD FELTNER, PARIS' FATHER: "WE EVEN HAVE PEOPLE NOW WHO AT NIGHT IF SHE IS OUTSIDE AND THEY KNOW SHE'S OUTSIDE - THEY'LL TURN THEIR HEADLIGHTS OFF AS THEY DRIVE BY."

Something else significant has happened since our last visit.

Jennifer and Todd have a new son - Paxton here - who was born only three weeks ago. Test results, due back in about a month, will reveal whether he's inherited the same genetic disorder.

TODD: "WE'VE BEEN LIVING AS IF HE HAS IT SINCE HE WAS BORN. WE'RE JUST HOPING THAT HE DOESN'T."

But if he does?

JENNIFER: "OUR WINDOWS ARE TINTED. WE HAVE THE SUITS. WE KNOW HOW TO DEAL WITH THE DISEASE."

That they do - and so now does the whole town.

When Paris goes outside in the sun - she wears her special suit - tailormade from NASA space fabrics.

And every six months, it's off to Dr. Lansing Ellsworth's office in Cedar City to check for skin cancers.

LANSING ELLSWORTH, M.D., DERMATOLOGIST: "AND WE GO OVER EVERY MOLE AND EVERY FRECKLE AND WE HAVE NOT FOUND ANYTHING YET." "BUT MORE THAN LIKELY IT WILL HAPPEN SOMEDAY AND WE JUST HAVE TO CATCH IT EARLY."

Catch it and treat it as it comes, because that's all they can do for now.

But for Paris' older brother Parker, who watches his sister like a hawk..

PARKER FELTNER, PARIS' BROTHER: "WE'RE JUST HOPING THAT SHE GETS..THE RESEARCHERS FIND A CURE FOR THE DISEASE."

Someday perhaps!

Though there's NO cure yet - it's very possible Paris will live a long, productive life without the sun. One of the few in the world who have this rare disease, is a man is in his 50's now and he's still doing well.

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