A doctor advising a sleepaway camp? That’s how 12-year-old Dylan Aristy Mota, diagnosed with lupus, found himself laughing on a high-ropes course as fellow campers hoisted him into the air, experiencing a childhood rite that might have seemed impossible.
In the rolling hills of upstate New York, Frost Valley YMCA has partnered with Children’s Hospital at Montefiore (CHAM) to create something remarkable: a traditional camp experience specifically designed for children with autoimmune diseases including lupus, arthritis, and myositis — complete with medical supervision on-site.
“It’s really fun,” said Dylan, thrilled that he got the chance at normal summer activities — thanks to doctors reassuring his mom they’d be at the camp, too.
When Immune Systems Turn Against Children
It may sound surprising but diseases like lupus, myositis and some forms of arthritis — when your immune system attacks your body instead of protecting it — don’t just strike adults. Though rarer in children, these conditions often manifest differently and more severely in young patients.
Dr. Natalia Vasquez-Canizares, a pediatric rheumatologist at Children’s Hospital at Montefiore, explains the unique burden these children face: “Imagine for an adult, it’s difficult. If you have that disease since you’re young, it’s very difficult to, you know, cope with.”
The challenges extend beyond the physical symptoms. Treatment requires immunosuppressive medications that tamp down young immune systems just as they’re learning to fend off germs. These drugs can also affect whether kids build strong bones during crucial developmental periods.
And spotting these diseases? That’s another hurdle entirely. Rather than expressing joint pain, a very young child with arthritis might walk with a limp or regress to crawling, making early diagnosis challenging for both parents and physicians.
A Camp Where Medicine Meets Marshmallows
The 12-day experience at Frost Valley offers children with these chronic conditions something precious: normalcy. Campers swim, create arts and crafts, shoot arrows at archery targets, and hike through nature — all while a specialized medical team including a pediatric nurse, rheumatologist, and physician remains available 24/7.
What makes this camp unique is how it seamlessly integrates strict medication schedules with typical summer fun. For many participants, it’s a rare opportunity to experience activities outside clinical settings.
“I do kind of get to forget about it,” one camper shared, referring to their condition.
The impact extends beyond the children. Medical professionals observe significant emotional benefits from seeing their patients in this new light. “Just seeing them in a different perspective than the sterile doctor’s office almost brings tears to my eyes,” noted one staff member.
Advancing Treatment Frontiers
Meanwhile, researchers are pushing boundaries in treating childhood autoimmune diseases. Seattle Children’s Hospital has opened the first clinical trial of CAR-T therapy for pediatric lupus — a revolutionary approach already showing promise in adults.
These “living drugs” are made by reprogramming some of patients’ own immune soldiers, T cells, to find and kill another type, B cells, that can run amok. Early tests suggest this could potentially lead to long-term drug-free remission.
On another front, Dr. Jill Buyon at NYU Langone Health is tackling congenital heart block, a rare fetal complication caused by maternal autoimmune disease antibodies crossing the placenta during cardiac development.
“This is a rare example where we know the exact point in time at which this is going to happen, allowing a chance at prevention,” Dr. Buyon noted.
Kelsey Kim participated in this experimental preventive treatment during her pregnancies. After her first daughter was born healthy but her second required a pacemaker, she continued with the treatment for her third pregnancy “partly in the hopes of saving my own baby and partly in the hopes of saving other people’s babies and saving them from the pain that I had experienced.” Her third daughter was born healthy in June.
More Than Just Summer Fun
For children with autoimmune diseases, the younger someone is when certain illnesses hit — especially before puberty — the more severe symptoms may be. Genetic factors play a stronger role in early-onset cases, with environmental stressors like infections often serving as triggers.
What does this mean for families? A constant balancing act between protection and normal childhood experiences.
Frost Valley YMCA, which has operated for over 100 summers and serves children ages 4-16 from all backgrounds, seems to have found a sweet spot with this specialized program. Their mission focuses on building healthy mind, body, and spirit while promoting inclusive and diverse programming.
As the sun sets over the camp and medications are distributed with the same routine as flashlights for evening activities, these children experience something profound: the chance to be defined by their cabin number and swimming abilities rather than their medical charts. And sometimes, that’s the most powerful medicine of all.
