Not surprisingly, since it is pretty rare, most people have never heard of Xeroderma Pigmentosum (XP). Almost four years ago, an LWB medical mission trip brought us to Jack, a child with this condition (read about our first meeting in a blog from 2007). Jack was brought quite a distance by his caregiver to see the doctors who had come from the U.S. “He was adorable, a little man in a hat and cute clothes and ever so serious,” Dr. Straka told us after she met Jack. She also told us it would be very hard for an orphanage to provide Jack with the type of care that he needs: massive protection from the sun, limited time outdoors, and regular medical follow-ups with a dermatologist. To have the care he needs, Jack really needs a family of his own.
Just recently a very positive update on Jack was sent by his SWI.