The town of El Dorado, Kansas, in collaboration with the National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, will flip their clocks from PM to AM on August 4 for one very special boy in their community.
Ten-year-old Peyton Madden lives with an extremely rare and life-threatening allergy to sunlight called Xeroderma Pigmentosum (XP), which highly restricts his ability to engage in typical daytime activities without extreme head-to-toe coverage, and with summer temperatures upwards of 105°F, he can easily overheat—a devastating limitation for a child who loves to play with friends, ride his bike, and swim. He has never been to the local pool with his friends.
On Aug. 4, 2017 at the stroke of dusk—8:45 p.m.—the entire town of El Dorado will turn evening into morning for Peyton, where he can engage in all that the community has to offer, but under the safety of darkness.
The event—“Good Morning Peyton”—is a large-scale community undertaking that begins after the sun has set: starting with a “morning” bike ride with his friends to a “day” at the municipal pool, a pancake “breakfast,” and most importantly, a community waiting to embrace Peyton. Mayor Vince Haines will be in attendance, armed with a sealed proclamation officially declaring the evening of August 4th as “Peyton’s Morning.”
“Good Morning Peyton” is an example of how truly life-changing things can happen when a community gets involved in supporting families impacted by rare disease, like the Maddens.
This effort is just one example of NORD’s year-long “Do Your Share for Rare” campaign, which aims to inspire and encourage those living outside of the community to get involved in ways big or small. Over the past 31 years, NORD has been providing education, advocacy, patient support and research to help all people with rare diseases. There are approximately 7,000 known rare diseases, most of which are life-altering and do not yet have a treatment.
The kindness, generosity, and humanity shown during “Good Morning Peyton” will in turn inspire others to do their own “share for rare.”
About Xeroderma Pigmentosum (XP)
XP is a rare inherited skin disorder characterized by a heightened sensitivity to the DNA damaging effects of ultraviolet radiation (UV), primarily from the sun.
The impact of XP is greatest on the skin, the eyelids and the surface of the eyes but the tip of the tongue may also be damaged. In addition, approximately 25% of XP patients also develop abnormalities of the nervous system manifesting as progressive neuro-degeneration with hearing loss.
People with XP have a 10,000-fold increased risk for developing skin cancer including basal cell carcinoma, squamous cell carcinoma and melanoma. They also have a 2000-fold increased risk for cancer of the eye and surrounding ocular tissues. These symptoms appear early in life, typically before age 10 years.
NORD is the National Organization of Rare Disorders, a not-for- profit advocacy organization dedicated to raising awareness for and improving the lives of
individuals and families afflicted by rare diseases in the United States through programs of education, policy, advocacy, research and assistance services.
There are 7,000 rare diseases impacting 30 million Americans, two-thirds of which are children, like El Dorado resident, Peyton Madden.