Fictional Girl Wedgie I Read A Fictional Book Once About A Girl With XP?

I read a fictional book once about a girl with XP? - fictional girl wedgie

(Xeroderma pigmentosum.) Is a disease that your skin can not tolerate sunlight, so it was always kept at home and could not go at night. This has not caused a lot of friends. I plan to write a story about this condition and I inspire the book, but usually only to my data recheck. Anyway, I forgot the title and wonder if anyone knows?