On November 10 I will be participating in Walk by the Light of the
Moon, a fundraiser to help raise money for the fight against XP. XP
(short for Xeroderma Pigmentosum) is a genetic disease. XP sufferers
are born with DNA that cannot repair cell damage that occurs from
everyday exposure to ultraviolet radiation coming from sunlight,
daylight (including shade), and fluorescent and halogen lighting. Even
a few moments of exposure to daylight can cause severe 2nd degree
burns that eventually become skin cancer. Patients with XP rarely live
to adulthood. Currently, there is no cure for XP. The DNA damage is
cumulative and irreversible.
The reason I am participating in this walk is because I recently met a
woman whose beautiful 7-year-old daughter Riley has this disease.
While most children spend their days playing outdoors, splashing in
the pool, and taking trips to the store with their parents, Riley must
stay indoors with the curtains closed. She is not allowed to see the
light of day or even just experience some of the everyday things that
we take for granted—a walk outside during the daylight, recess and
lunch outside with her friends, and trips to the park and pool before
As you can imagine, XP is a very lonely and isolating disease. As
Riley gets older, she is not only made more aware of what she is
missing, but she is faced with the knowledge that she will most likely
not live to do so many of the things little girls dream of--going on
dates, getting married, even just having a job and living her own
life. And for Riley's parents, the anguish of knowing they will lose
their daugher to this disease is a weight that gets heavier every day.
Their one ray of hope is that doctors believe a cure for XP could be
found in the near future if funds were available for research. Very
little money is granted towards research for an XP cure because the
disease is so rare--only 150 people in the country have it. And THAT
is why I am walking on November 10.
Would you be willing to donate to this cause? Our goal is to raise $200,000, all of which will go to research, and your entire donation is tax deductible. If you would like to help, please send your donation in the form of a check made out to XP Family Support Group to:
23052-H Alicia Parkway #366
Mission Viejo, CA 92692
This walk will take place in Ladera Ranch, so if you're local and
you'd like to volunteer that night or even join in the walk yourself,
please let me know and I can send you the necessary information.
Whether you are able to donate or not, I would ask that you please
pray that we would be able to reach our goal and that God would lead
researchers to a cure for this disease!
And so we come to the end of the blog…
1 year ago