Each year, approximately 40,000 babies are born in the United States with a heart problem, making congenital heart defects (CHD) the most common type of birth defect. As common as it may be, for children living with CHD it’s not always easy to find other kids who understand what they’re going through. Camp Odayin changes that. Its mission is to provide fun, safe and supportive camp experiences for young people with heart disease and their families – like Riley.
Fifteen-year-old Riley was diagnosed before birth with a type of single ventricle defect, meaning the heart only has one functioning ventricle instead of two. Mom Krista was referred to a health system in the Twin Cities where she and her baby were monitored until delivery. After Riley was born, he continued to receive care for his condition at that hospital for several years – undergoing four open-heart surgeries and multiple cardiac catheterization, or “cath,” procedures.
When Riley was 7 years old, his cardiologist took a new position out of state and referred the family to The Children’s Heart Clinic, Children’s Minnesota’s Cardiovascular program. Since transitioning to Children’s Minnesota, Riley’s has been stable but continues to have testing and procedures including a heart cath, labs and a cardiac MRI.
Krista and her husband Paul first learned about Camp Odayin from a friend whose daughter also had CHD. Their friend had heard about Riley’s diagnosis and encouraged the family to get involved.
Their first camp experience was a Family Camp in 2012 when Riley was 5 years old. It gave them the chance to connect with other families with children with heart disease to share their health, emotional and social concerns.
“Family Camp was an amazing experience. You meet these other families, and they understand without you having to say anything, everybody’s story is similar. We are one big family,” described Krista.
Not only did Riley enjoy going to camp, but his two younger brothers did too! Riley has also been to Camp Odayin’s day camp experiences, Winter Camp and Residential Camp.
“You meet a lot of people who are just like you. It’s cool to know you’re not the only one,” said Riley.
Paul remembers one moment that shows the power of the Camp Odayin experience. “Riley had to give his jersey back to his coaches at the end of the season. When he took off the jersey others saw the scar down his chest, and I remember Riley saying, ‘This is from my surgeries for my special heart.’ Camp Odayin gave him the confidence to accept his story.”
These days, Riley is staying active – but understands the limitations he faces because of his CHD. He enjoys playing baseball, fishing, hunting and being a big brother to his siblings Brecken and Dylan.
Camp as medicine
Children’s Minnesota has a longtime partnership with Camp Odayin. Many former and current cardiovascular patients participate in the various camps as it inspires confidence and a sense of community among the campers. The Children’s Heart Clinic sends more patients to Camp Odayin events than any other hospital.
“Volunteering at residential camp and other Odayin events allows me to see our patients in a different light. Camp Odayin allows our patients to identify other children with similar life experiences, and these commonalities inspire them to be more confident, adventurous, and free to be themselves. The Odayin community nurtures the soul and psyche of a child with heart disease like no other. We recently completed a research study that proved camp is good medicine and has a positive impact on the lives of the campers. “said Dr. Schneider.
In addition to the day and residential camp experiences, Camp Odayin has found new ways to support children and their families. They hosted online camps during the COVD-19 pandemic, mom and dad retreats and so-called “Ticker Talks” education events to teach kids about their hearts and how to keep them healthy.
Children’s Minnesota employees have graciously volunteered countless hours to Camp Odayin over the years to support Children’s Minnesota patients like Riley, as well as other children with heart disease from across our region. Camp Odayin is dependent on volunteers for its continued success and is always looking for new individuals to join its generous family of donors.
You can learn more about Camp Odayin here.