News from NORD

Small Kansas Town Turns Night Into Day for Boy With Rare Disease


 

A new documentary video developed by NORD shows how a small community in Kansas came together to support an 11-year-old boy who has a rare disease that makes it necessary for him to avoid sunlight.

Peyton Madden has xeroderma pigmentosum (XP), a rare condition resulting in extreme sensitivity to the sun’s ultraviolet rays. As a result, he is not able to join friends and classmates in typical activities such as swimming in the community pool.

As part of NORD’s “Do Your Share” campaign, community leaders in El Dorado, Kansas, organized a surprise event for Peyton on a recent evening. NORD was on hand with a videographer. Watch the 5-minute video.

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