Life in darkness
Piper’s skin is so sensitive that she feels a burning pain when UV rays hit her. A protective film on the windows of the family’s homes and vehicles block out ultraviolet rays and give Piper safety. She is never outside for more than seconds during daylight so her skin does not develop cancer. Her dad pulls the SUV close to the entrance, and Piper runs inside wearing protective clothing.
Piper’s mom, Kathy Rainen, tests the UV levels in a Mexican restaurant near their home in Keystone, Colo., while Piper waits in the car. The UV reading was low enough to be safe for Piper, and she was able to go inside for dinner.
The Rainen family takes the meter everywhere they go. It is the type used by art museums to keep the atmosphere archival.
A necessity for her, Piper tries on sunglasses with 100 percent UV protection at Wal-Mart. She bought three pairs because she frequently loses them.
A golf cart with windows treated to block UV rays enables Piper to travel around campus at Baker University in Kansas.
Piper plays around with her parents Kathy and Mike. The Rainen family’s strong bond has helped them get through difficult times when Piper has been suicidal.
Piper says she lost most of her friends when she was diagnosed with Gorlin’s syndrome. Up late each night by herself, she plays on her computer surfing the Internet.