Choose the Night

by Kerry Blair

Can you imagine living your whole life in semi-darkness?

As a writer, I’ve tried to imagine it. A character in the Nightshade series, Sam’s adopted little brother Arjay, is what I came up with. He gets up at dusk and goes to bed when the sun rises. He does everything—school, scouts, even dental appointments—at night. Even then, to protect his skin and eyes from artificial light, he wears long sleeves, hats, gloves and goggles. (In Phoenix. In the summertime.) Sometimes he wears a complete Darth Vader costume to the grocery store because he gets better coverage—and fewer strange looks—that way. While Arjay happily tells everyone he meets that he was born nocturnal, he actually “chooses the night” for reasons of genetics rather than eccentricity. I’ve portrayed Arjay as a kid who suffers, like thousands of real kids worldwide, from a very rare genetic condition called xeroderma pigmentosum.

XP is an inherited inability of the skin to repair DNA damage from ultraviolet light. While ultraviolet light attacks everybody’s DNA, most of us are able to repair the damage automatically. This is not the case with XP kids. Sunlight (indeed all types of ultraviolet light) causes their skin to thin at an alarming rate. Unless carefully protected, they develop skin cancer, often before the age of five. This melanoma is not only disfiguring, it leads to a variety of truly frightening neurological disabilities. Worse, the cancer spreads rapidly to other organs. Thus, babies born with XP often do not live to be teenagers, let alone adults.

I became aware of this condition from a newspaper article about a real kid who was not only living with XP, but thriving. I marveled at the extraordinary lengths his family took to see to it that his life was as normal and full of fun and adventure as possible. I thought to myself, “Now there’s a real hero,” and took notes. His story – and his initials – eventually became Arjay Shade in Mummy's the Word and Ghost of a Chance.

I’ve donated royalties to the cause, but now that I’m off to promote the series again, I hope to do a little more. I plan to use my radio and newspaper interviews, book signings, and other public appearances to help raise awareness for XP. As part of this, I’m lugging a plastic jar with me from place to place, begging for pocket change and giving small thank you gifts to everyone who contributes a dollar or more. (My motto: Your spare change can change a child’s life.) This month alone I hope to collect enough nickels and dimes from kind folks in Mesa, Tucson, and the Salt Lake Valley to send at least one sun-sensitive kid to Night Camp.

Camp Sundown is a year-round night camp run by the not-for-profit XP Society. It offers light-sensitive children and their families a way to meet other families who share the same challenges while the kids enjoy a camp experience like their peers—just at the opposite time of day! There is no charge for campers under 18 because camperships are provided exclusively by donations. For just $350 any individual or organization can send a very special child to this unique, fun, life-enriching Night Camp.

In my first book, Arjay is the one raising money for Camp Sundown and XP research. Now that the next book in the series is out, I’ve decided to help him out a little myself. It isn’t much, but it doesn’t take much to make a big difference in the life of a special child.