Rediscovering Hope: Nolan’s Story

Nolan lives with Eosinophilic esophagitis (known as EoE), an autoimmune disease that affects the digestive system and can make swallowing food nearly impossible. For kids like Nolan, it makes experiencing all the fun and joy of childhood a real challenge – except when at a SeriousFun camp…

“Before I came here, all I used to think about was my disease. Once I got to camp, it was the freedom I’ve always wanted. This is what I’ve been waiting for my whole life.” -Nolan

Nolan was first diagnosed with EoE at just over a year old; after his parents Anissa and Ken noticed he had abruptly stopped breathing. While EoE is a rare disease, the Jacox family has found a place where Nolan doesn’t feel different or isolated. At Double H Ranch, the SeriousFun camp in upstate New York, he isn’t alone.

“They’re so thorough in finding out what his needs are, what his daily routine is. Their upmost priority is your child’s safety, and then their second priority is to make sure they have fun.” -Ken, Nolan’s Dad

At SeriousFun camps around the world, effectively managing the needs of children living with rare diseases like EoE is a big job, but one the medical staff does happily and with the utmost care. Dr. Qualia, a pediatric gastroenterologist at Albany Med, is a volunteer camp doctor at Double H Ranch. Dr. Qualia sees first-hand the impact camp is having on the children with serious medical conditions. He also recognizes the profound impact camp has had on how he sees the children he treats.

“When you’re around other kids going through the same thing you can come out of shell somewhat […] I think being at camp improves self-confidence and self-esteem.” -Dr. Qualia

It’s been over thirty years since, Paul Newman created that first SeriousFun camp, where children diagnosed with serious illnesses could “kick back”, have fun, and escape the daily struggles associated with their medical treatments.  Since then, and each year, tens of thousands of children living with serious illnesses get to experience the fun, friendship, and independence they deserve thanks to the camps and programs of SeriousFun. For these children, families and volunteers, camp is so much more than just a place – it’s an experience, a feeling that anything, and everything, is possible.

The Rediscovering Hope video series was created in partnership with Shire. Partners like Shire contribute funding, resources, and volunteers to support SeriousFun camps and programs all around the world. Shire’s commitment supports camperships, family weekends, and other capacity building efforts to ensure camps can deliver life-changing camp experiences to children living with serious illnesses and their family members all around the world, 100% free of charge.

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