Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is a reality. In a new documentary released today, see how the National Organization for Rare Disorders (NORD) partnered with Peyton's hometown to turn one special night into day for him.
"More than 400 people came out to show their support and interest in getting to know one young boy struggling with a rare disease a little better. That was the most remarkable part of the event," said Lisa Phelps, Director of Marketing and Community Relations for NORD. She added, "We are so grateful to have had the opportunity to film his experience and share it with the world. We hope that it serves as a springboard for conversations about what individuals and communities can do to make those impacted by rare diseases feel less isolated and more supported."
The documentary, titled "Good Morning Peyton," is created by acclaimed filmmaker and director Alison Klayman of Washington Square Films and captures the story of Peyton, an 11-year-old boy with an extremely rare and life-threatening disease called Xeroderma Pigmentosum (XP) that causes him to be allergic to ultraviolet radiation (UV rays), which highly restricts his ability to engage in typical daytime activities without head-to-toe coverage. On August 4th, the town of El Dorado, Kansas, in collaboration with NORD, turned night into day for Peyton, providing him with a unique opportunity to engage with his friends, family, and neighbors at the municipal pool without his head-to-toe coverage, under the safety of darkness.
"This entire experience – from filming to the surprise event – was life-changing for Peyton. At one point he whispered to me, 'Mom, they are really interested in me and who I am?' As a mother, and especially as a mother of a child with a rare disease, that touched me so much and to know that our community went out of their way to provide that to our little boy left us beyond words," shared Sarah Madden, Peyton's mother.
NORD, the leading independent nonprofit organization dedicated to improving the lives of patients and families living with rare diseases, developed and released the documentary as part of its year-long Do Your Share campaign, which launched earlier this year with a public service announcement to shed light on the need for more discussion on rare diseases and inspire individuals and communities to show their support for those impacted by them.
Rare diseases impact the lives of 1 in 10 Americans; more than half are children, like Peyton. Individually, rare diseases affect fewer than 200,000 people by definition but collectively, the community represents 30 million Americans searching and working tirelessly for research, treatments, and cures.
To hear from individuals and families on how you can do your share for rare diseases, and to view the documentary, visit www.doyourshare.com.
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is the leading patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. www.rarediseases.org.
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