Family in Twilight for Sun-Sensitive Girls : Health: Two daughters have a rare genetic intolerance that leaves victims vulnerable to skin cancers, blindness and neurological damage after exposure to sunlight.
The Harrison family has been harassed, shunned and ridiculed as “vampires.” Their truck was vandalized, an antenna atop their house was shot off, one of their dogs was killed.
All this because their daughters, Jaime, 9, and Sherry, 7, have a rare genetic intolerance for the sun that leaves its victims vulnerable to skin cancers, blindness and neurological damage.
The girls spend their days inside a dimly lit house. Only before dawn or after dusk can they venture out for typical kid pastimes like school, ballet, judo and camping.
“When it gets dark, we go out to play,” Jaime said.
In the 7 1/2 years since the disease was diagnosed, the family has adapted to living in the twilight. They wish others would be more tolerant.
“Sometimes it seems that for every good person, there’s four or five bad people,” said Jim Harrison, 38, a cabinetmaker and part-time judo instructor.
After experiencing persistent harassment while living in Illinois and other Northern California towns, the family found relative peace in this tiny Sutter County town four years ago. Meridian is about 70 miles north of Sacramento.
A television movie about the Harrisons was expected to bring new attention. Kim Harrison, 34, said they were willing to trade some privacy to help educate others.
“Children of the Dark,” starring Peter Horton and Tracy Pollan, aired recently on CBS.
“I think it would make a lot of difference for the movie to come out, and more people will know,” said Kim Harrison, the girls’ mother, before the showing.
The Harrison girls have xeroderma pigmentosum, or XP, an often fatal disorder. Only one in about 250,000 people carries the gene. Because the gene is recessive, both parents have to carry it for the disorder to be passed on. Even then the chances are one in four of having a child with XP.
It is not contagious. The girls’ 16-year-old half-brother, Bobby, does not have the disorder.
Growing up in Aurora, Ill., Jaime showed symptoms early. Baby pictures show her screwing her eyes shut and turning her head from the sun. Her skin burned badly, though usually not for 24 to 48 hours after exposure.
Doctors initially thought she had a rash or allergies.
On a camping trip in 1986, Jaime became seriously ill and had to be hospitalized. Photos show her skin a mass of blisters. Her eyes were swollen shut. Her mouth was so cracked and raw she couldn’t drink from her bottle.
A skin biopsy revealed XP. Doctors said she would likely die at an early age from melanoma cancer.
Sherry was tested a short time later; the results were the same.
“As far as giving it to the kids, we felt really bad about ourselves for a long time. . . . We felt very defective,” Kim Harrison said. “We’ve learned a lot since then. We understand that all kinds of people have gone through things like this.”
Their mother has started an informal network for people with XP. She has heard from about 25 others, including people in Canada, Europe and Israel.
“I do not think these kids are less than perfect,” she said. “A fluke of nature happened that changed something about them. They’re not less than the rest.”
Some people advised the Harrisons to open all their windows and let nature take its course. Instead, they closed up the house and began a nocturnal existence. In 1987, they moved to California.
When the girls must leave the house in daylight, they put on gloves, long-sleeved shirts, sunglasses and ultra-strong sunscreen, then cover themselves in sheets.
The approach seems to work. Tumors normally develop in XP children by age 7, Kim Harrison said. So far, her daughters are healthy.
They attend school three days a week. Teachers cover the windows when the girls are there. The sisters also study at home.
Jaime said she doesn’t mind staying indoors. But Sherry, who has never been exposed to direct sunlight, sometimes chafes under the restriction.
The Harrison house overflows with toys and animals. One room looks like an indoor playground with a giant inner tube, climbing bars and a small pool filled with plastic balls instead of water.
“They’re doing well medically. They’re doing well socially. They’re doing well in school,” Kim Harrison said. “I think we’ve proved a point. And that’s not what we set out to do. We wanted to save our children.”