It was surreal to watch Dateline on Sunday, June 14th. The second half of the program (Beginning about 22 minutes in) told the story of the Feltner family, another Utah family that deals with Xeroderma Pigmentosum.
Dateline did a great job explaining the realities of living with XP.
I urge you to watch it.
The video is online for free until 07/19/15.
Here is the link: