ARJAY
SHADE – THE INVISIBLE BOY?
Imagine living your whole life in
semi-darkness.
A character in the Nightshade series, Sam’s adopted little brother Arjay, does just
that. He wears hats and gloves in
Phoenix
in the summertime and happily tells everyone he’s nocturnal, but Arjay
“chooses the night” for reasons of genetics rather than eccentricity.
Like thousands of real kids worldwide, he suffers from a very rare
condition called xeroderma pigmentosa.
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 disabilities. Worse, the cancer can spread rapidly to other organs.
Thus, babies born with XP often do not live to be teenagers, let alone adults.
WHY
SUPPORT XP RESEARCH OVER MS?
XP is primarily a kid’s disease, and while I
have sometimes-debilitating MS now, I had a glorious childhood! I climbed rocks,
played on the beach, swam, hiked, and camped—all under the bright,
Southwestern sun. XP children can’t do that. My goal, then, is to help as many
special children as I can experience at least a taste of what I had. I included
Arjay in the Nightshade series—and
now hope to promote this cause in book tours and on this website—in order to
raise awareness of XP. It’s a little thing, but “God does not expect us to
do great things as often as he expects us to do small things with great love.”
Mother Teresa is credited with that line. She also said, “Nobody can do
everything, but everybody can do something.” This is one of my “somethings.”
CAMP
SUNDOWN
Now XP
children can go to camp! Dan and Caren
Mahar of the XP Foundation are making childhood dreams come true.
Camp
Sundown
is a year-round night camp that offers sun-sensitive children and their
families a way to meet other families who share similar challenges and enjoy a
camp experience like their peers—just at the opposite time of day! There is no
charge for campers under 18 and their parent or guardian. Camperships are
provided by donations. For just $350 any individual or organization can send a
kid to this unique, fun, life-enriching nighttime camp.
In the
first Nightshade book, Mummy’s the Word,
Arjay is hard at work raising money to sponsor camperships to
Camp
Sundown
. In an upcoming book he will turn
his attention to collecting protective clothing and gear for XP children who
live in a small village in
Guatemala
where the needs are very great.
XERODERMA
PIGMENTOSUM SOCIETY
Want to learn more about
this rare genetic disease and the people who devote their lives to helping XP
kids and their families? The XP Society is a 501(c)(3) not-for-profit charitable
organization founded in 1995 by Caren and Dan Mahar, whose youngest daughter,
Katie, has xeroderma pigmentosum. Please
visit www.xpsociety.com to find out how
you can help them help more children.
PLEASE HELP ME HELP
THEM
A “Help Arjay Shade
Send a Kid to Night Camp!” jar will be available at all my book signings and
every penny donated will be sent to
Camp
Sundown
! (Everyone who donates will receive an autographed page from an original Nightshade manuscript as a thank you.) Also, a portion of the
royalties from Ghost of a Chance will
be used to send a kid to camp! (I’d like to do much more, but I’m also
trying to send a kid—my kid—to college!)
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