A childhood out of the sunlight

9:40 PM, Nov 12, 2012   |    comments
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SACRAMENTO, CA - A group of children are forced into the shadows of darkness because of an extremely rare genetic skin disease. They're called "Children of the Night" because one of the most common elements most people need to live could kill them.

As the sun peeks through the clouds and rain showers retreat, many kids would beg to go outside and play. But not Aimee Milota and her friends. For them, sunlight can be deadly. They have a rare genetic skin disease called xeroderma pigmentosum, or "XP."

"Sometimes it's hard," Aimee said. "Sometimes it's OK."

Their delicate skin cannot tolerate any ultraviolet radiation, so even a few minutes of sunlight can cause cell damage that inevitably turns to cancer. Professor of Dermatology James Cleaver of the University of California, San Francisco discovered XP in 1968.

It's a direct result of both an enzyme deficiency and sun exposure." Cleaver said. "Patients lack the enzyme for repairing damage to the DNA of their skin."

Ten-year-old Aimee has already had to endure 22 surgeries for skin cancer.

Whenever I have to leave anywhere, I have to put my hood and gloves on and I have to cover up every part of my body," Aimee explained. "Every piece of skin, or if I don't, I will get skin cancer."

Aimee was diagnosed at 16 months old. The life-threatening disease affects one child in every million. It can also lead to neurological problems and blindness.

Having a child with XP was kind of almost like a death sentence," Michele Milota said. Aimee's mother wondered how her daughter would go to school if she couldn't go outside.

In searching for hard-to-find answers, Milota formed the XP Family Support Group and learned how to keep Aimee alive. The non-profit organization holds an annual retreat, which was recently held in Old Sacramento. It brought 35 kids and their families from all over the world to share their experiences. Aimee lives in Sacramento but other kids came from as far away as London.

As a mom it gives my child the opportunity to meet other XP patients, and it allows her to know that she's not the only one out there with XP," Milota said.

For these kids, fun comes after the sun goes down. One night, they enjoyed a night-time train ride among people who understand them.

Whenever we go anywhere, usually when I'm by myself, everyone stares and calls me beekeeper or stuff like that," Aimee said.

Aimee said she looks forward to the retreat every year. "I love it. It just helps me," adding "I like it when everybody is here and we're together and we do everything."

With proper protection and education, having XP is no longer considered a death sentence. Take Sherry Harrison. She is a 26-year-old woman who is in the prime of her life and has never had skin cancer. She was tested at birth because her older sister had the disease.

I've never been outside. I've never been in the sunlight before," Harrison said. "I've thought about it before -- a lot of times, just going outside and doing whatever everybody else does. But then I look in the mirror and say, 'my skin's good. I'll stay inside.'"

Ironically, people with XP may provide the very answers that could help researchers eventually find the cure for skin cancer.

We can see how certain genes are mutated by sun exposure and in XP patients. These are mutated at much higher rates and so it makes it possible for us to identify these," Cleaver said.

These "Children of the Night" like Aimee just ask for understanding and sensitivity..

We can't do everything that a normal person can do," Aimee said. "We have to protect ourselves and help ourselves just get through everything."

There are 300 people living with XP in the United States and 1,000 in the world.

by News10 reporter Siemny Chhuon

For more information, log onto www.xpfamilysupport.org .


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