Inclusive Summer Fun at Camp Riley

Erin Rosenberry uses non-verbal communication, and when her mom, Barb, sees pictures of her at Camp Riley, she knows that Erin is at the right place. “She just looks so happy,” Barb said. “I am so thrilled for the opportunity for someone like Erin to have a normal camp experience.”

Erin is 15 years old and she lives in Elkhart, Indiana. Like many Riley kids, her journey has been a long one. Barb remembers that Erin was initially not hitting her developmental milestones. After trying a few interventions, they were referred to Dr. Marilyn Bull at Riley Children’s Health, whom they were able to see in South Bend. Despite testing, they were not able to determine a diagnosis.

When Erin was 18 months old, her seizures started. At the worst, she would have 30-40 mini-seizures per hour. Now, with the help of medication, she only has about 30 per day. The team at Riley Children’s treated Erin’s seizures while continuing to search for a diagnosis. In 2021, through genetic testing, Erin was diagnosed with Syngap 1-related genetic disorder. Barb was relieved to finally have a diagnosis.

Barb found support when she joined a group for moms of kids with special health needs. One of the other moms talked about Camp Riley and suggested that Barb look into it. Erin attended Camp Riley for the first time in 2019.

“I signed Erin up on the first day,” Barb said. “It is so difficult to find something to fit Erin’s needs.”

Camp Riley staff are often students who are preparing for careers in healthcare or disability services. Riley physicians and nurses are available onsite 24 hours a day while camp is in session. Campers like Erin get to participate in activities that they may not get to do anywhere else, from waterskiing to archery.

“Camp Riley has everything that she loves to do,” Barb said. “She gets to be a regular kid at camp, and they have all the right things in place to be able to take care of her.”

A full and exciting 2023 Camp Riley season is underway. Camp Riley would not be possible without donor support made available through Riley Children’s Foundation. Your generosity ensures that Camp Riley has a full seasonal staff, 24-hour medical care, and that no family is turned away for financial reasons.