Camp Helps Children With Rare Disease

Children with the disease Xeroderma Pigmentosum (XP) cannot be exposed to sunlight without suffering severe skin damage. Just simply going outside, for even seconds, greatly increases the chance of getting skin cancer for an XP patient. Sadly, children with this disease miss out on many opportunities other kids enjoy. But not all activities!

Caren Mahar, director of the XP Society, was determined not to let children afflicted with XP miss the chance to attend summer camp. Caren and Dan Mahar had already started the XP Society in 1995 to support patients and research for a cure.

The Mahars followed this with the establishment of Camp Sundown, which is a retreat in Craryville, NY for kids with XP. What makes this camp unique is all the activities take place at night, when it is safe for someone with XP to go outdoors.

The XP Society describes the camp as a "family retreat and medical conference combined" to help the "XP family feel less isolated in their situation, providing useful support and education to live our daily lives with XP."

This year the camp ran six sessions in July and October. The cost is free for an XP patient and their family but the XP Society counts on donations to make this possible. A donation of 350 dollars pays for the entire stay of one family. But any size donation is appreciated by the camp, including games for the kids to use during the daylight hours as they wait for the sun to go down.

For more information about the XP Society and Camp Sundown please contact Caren Mahar at [email protected] or visit the web site www.xps.org.