Camp Sundown: Free Night Sanctuary For UV-Sensitive Children

Camp Sundown is a groundbreaking ‘night camp’ specifically designed for children suffering from UV light-sensitivity disorders, such as

xeroderma pigmentosum (XP)

, actinic prurigo, erythropoietic protoporphyria (EPP), solar urticaria, porphyria, vitiligo, and albinism. These conditions force affected children to live shielded from all sources of ultraviolet (UV) light, including sunlight and even certain artificial lights, turning daytime into a period of isolation and risk. Located on 60 acres of wooded land in Craryville, upstate New York, the camp flips the traditional schedule: days are for rest and indoor activities, while nights burst with outdoor adventures under the stars. Founded in 1996 by Dan and Caren Mahar for their daughter Katie, who was diagnosed with XP at age 2, Camp Sundown has grown from a small motel gathering of 11 families into a vital annual retreat drawing participants from around the world. Each session lasts one to six weeks, depending on funding, and is provided completely free to families, relying on charitable donations that cover approximately $20,000 per week-long session.

Kindred Spirits

For children like these, the sun is not a source of joy but a relentless enemy that can cause severe rashes, blisters, intense pain, or even life-threatening skin cancers with just minutes of exposure. Many with XP, a rare genetic disorder affecting DNA repair mechanisms, face dramatically heightened skin cancer risks, with some succumbing young without precautions. Camp Sundown offers a rare sanctuary where kids meet peers facing identical challenges, forging bonds that combat lifelong loneliness.

Take 15-year-old Mackinly “Mack” Adams from Pittsburgh, who has

actinic prurigo (AP)

. UV exposure—even from fluorescent lights—triggers severe rashes on his skin, preventing traditional schooling. He thrives in an online homeschool program coordinated with his district. Mack and his parents are part of a core group of eight returning families who attend a dedicated week each summer. ‘I just feel more alive and active at night,’ Mack shares, capturing the camp’s liberating essence.

Kelly, another parent, emphasizes the emotional lifeline: ‘I cannot begin to describe how much these families mean to me. Whenever a child has a bad day, we know that we can message, text, call or email and have the support we need. Camp Sundown may be one week a year, but its effects are felt every day.’ The camp reminds everyone that these are ‘regular kids, just with an irregular schedule or irregular clothes.’

The Origins of Camp Sundown

Dan and Caren Mahar’s journey began with heartbreak when their youngest daughter Katie, now 23, was diagnosed with XP at age 2. This progressive genetic condition impairs the body’s ability to repair UV-induced DNA damage, leading to extreme photosensitivity. Even brief sun exposure causes burns and blisters, and without protection, skin cancers develop early and frequently. Katie has never had melanoma—one of the oldest XP patients to avoid it—thanks to rigorous sun avoidance since toddlerhood. Determined to give her a ‘normal childhood’ experience like summer camp, the Mahars founded Camp Sundown in 1996. It started modestly: a five-day event at a local motel for 11 families with children affected by XP or similar disorders like solar urticaria or porphyria.

Fundraising efforts culminated in 2003 with the construction of the permanent 60-acre facility. The camp features eight bedrooms, each with two beds, private bathrooms, tinted windows, and light-blocking curtains. Lighting uses low-wattage (40W max) incandescent bulbs that emit no UV, unlike fluorescents or LEDs. This UV-safe environment extends to every detail, ensuring safety around the clock.

The Xeroderma Pigmentosum Society (XP Society), also founded by the Mahars, oversees the camp as its flagship project. Celebrating over 28 years, it combines family retreats with medical conferences, uniting XP families and leading researchers to share experiences, information, and laughter.

A Day (and Night) at Camp Sundown

Camp life inverts the norm to protect campers. Days focus on rest and indoor pursuits:

• Sleeping in darkened rooms to recharge after late nights.
• Communal meals in a spacious dining hall.
• Indoor swimming in a pool shielded by 100% UV-blocking film on windows—unlike typical pools exposed to sunlight.
• Watching movies, playing video games, crafts, and yoga in the entertainment room.

Nighttime unleashes the magic, with activities peaking from dusk till dawn. Supported by local businesses and organizations, campers enjoy:

• Art projects and games like kickball and Frisbee under the stars.
• Moonlit swims at a nearby lake.
• Horseback riding and campfire singalongs.
• Field trips, including the annual moonlight festival in Campbell Hall.

The Campbell Hall outing is legendary: fireworks, hot-air balloon rides, carnival games, and a 1 AM softball showdown with the local fire department. Campers often return at 5 AM, buzzing with excitement. ‘The firemen mean so much to the kids. They look forward to Campbell Hall as much as Christmas,’ says Kelly.

First-time campers get a dedicated July week to ease in, meeting new friends from across the globe and experiencing this ‘different time clock.’ Scientists join, providing one-on-one consultations alongside the fun.

Acceptance and Inspiration

Beyond activities, Camp Sundown builds profound acceptance. Cristofeer Soto from Queens, New York, started attending in 2001 with XP. Now a counselor, he’s undergone 182 skin cancer surgeries since age 4, his body marked by brown spots. Yet, he says, ‘I’ve met so many people from around the world who have become my family through the years.’ The camp transforms isolation into belonging.

Morgan McKillop, 8, with EPP—a photosensitivity disorder from enzyme deficiency—marks her third summer. Diagnosed at 2, she joins nights of s’mores, games, and peer connection, running free as any child should.

Photographer Adi Lavy documented the camp, highlighting how summer’s long days exacerbate homeschooling kids’ isolation. Camp Sundown counters this, offering purpose and joy.

The Medical and Emotional Impact

UV-sensitivity disorders like XP affect DNA repair, leading to 1,000-fold increased skin cancer risk. EPP causes excruciating pain from light absorption in porphyrins. Camp Sundown not only provides recreation but integrates medical experts for checkups and advice, blending fun with forward-thinking care.

Disorder	Description	Key Risks
Xeroderma Pigmentosum (XP)	Genetic defect in UV-damaged DNA repair	Skin/eye cancers, freckling, early death
Actinic Prurigo (AP)	Immune reaction to UV	Severe rashes, even from fluorescents
Erythropoietic Protoporphyria (EPP)	Enzyme deficiency causing porphyrin buildup	Painful burning, no immediate burns but intense pain
Solar Urticaria	Hives from sun exposure	Anaphylaxis risk

This table summarizes common conditions at camp, underscoring the need for UV-free spaces.

Frequently Asked Questions (FAQs)

What is Camp Sundown?

A free ‘night camp’ for kids with UV-sensitivity disorders like XP, running activities at night for safety.

Who founded it and why?

Dan and Caren Mahar in 1996 for their daughter Katie with XP, to provide normal camp experiences.

What activities happen?

Indoor days: sleep, swim, games. Nights: outdoor sports, field trips, moonlit swims, festivals.

Is it free? How is it funded?

Yes, fully free. Costs ~$20,000/week via donations. No family pays.

Can first-timers attend?

Yes, dedicated week in July for new families worldwide.

What disorders does it serve?

XP, EPP, AP, solar urticaria, porphyria, etc.—any severe UV sensitivity.