Rare condition means life mostly in dark for two local girls

4:54 PM, Apr 23, 2010   |    comments
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SACRAMENTO, CA - Two girls with a rare genetic condition that prevents them from being able to play in the sun spent Friday at a golf tournament at Haggin Oaks, a fundraising effort to help cope with their condition.

Aimee and Greychen, both 7 years old, must wear special hoods and other protective clothing to shield their skin from sunlight and ultra-violet light. Their medical condition, Xeroderma Pigmentosum (or XP) is a rare, inherited disease affecting both males and females. It causes a person to be extremely sensitive to the damaging effects of ultraviolet radiation. Undiagnosed and untreated, XP can lead to the early onset of skin cancer and blindness.

Aimee's mother, Michele Milota started the XP Family Support group several years ago after her daughter was diagnosed with XP at 16 months old.

"Since her diagnosis, she's had 22 skin cancers removed," said Milota. She organizes the yearly golf tournament and other activities to raise funds for research, sun protection, and a summer "camp under the stars" for children with XP.

The XP Family Support Group has been nominated for a Raley's Reach Award. They hope to win and use the money to set up a nighttime camp in Sacramento for children with XP. To vote, follow this link to Raleys Reach

By Jennifer Smith, Jsmith@news10.net



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