Camper Carson’s Story

Camp Korey has become a fundamental part of Carson’s life and is now something we cannot imagine life without.  

Carson’s medical journey began when he was just a baby.  He showed signs of some sort of severe GI disorder, but no one was able to solve the mystery.  After years of lengthy hospitalizations, painful tests and procedures, surgeries, and an endless list of specialists within our home state of Oregon, we still had no answers.  Eventually, Carson was referred to Seattle Children’s Hospital where we met the incredible Reconstructive Pelvic Medicine and Motility teams.  With more testing and an emergency surgery, Carson received an ostomy bag at the age of 4.  He was so proud of his ostomy bag and frequently showed it off to strangers in public.  After two years with an ostomy bag, it was time to move to the next step in treatment which was reversing his ostomy and receiving an Antegrade Continence Enema, or ACE for short.  While hospitalized at Seattle Children’s Hospital after yet another surgery, a friendly nurse was telling us about her summer and how she volunteered at a camp for kids with complex medical needs.  This piqued my interest, and I immediately started researching.   

Carson was 6 when I first enrolled in family camp at Camp Korey.  When we arrived at camp, Carson took off to play with new friends while I sat back and observed.  It was then that I was approached by two camp nurses who I knew from Seattle Children’s Hospital.  The nurses explained that there was another little boy attending camp this weekend and he was nervous about his upcoming ACE surgery, a surgery that had already been canceled once or twice due to nerves.  The nurses quietly asked if I would mind showing Carson’s ACE to the little boy in hopes of easing those nerves about surgery.  I called Carson over who immediately lifted up his shirt to show off his medical hardware with confidence.  Since then, the other boy received his matching ACE and he and Carson attend camp together every chance they get!  I also grew close to the family, and we often coordinate play dates and sleepovers when we’re in the area!  Additionally, we frequently see camp friends when we travel to Seattle Children’s for appointments which makes those visits less challenging. 

Each time we attend camp, Carson and his camp bestie take on new kiddos their age and the group consistently grows.  These kids are not simply making friends at camp, they are building connections with individuals who share the unique feelings of having a complex gastrointestinal condition.  As Carson enters the complexity of teenage years, he will already have a strong friend group that he can reach out to when his friends at school simply do not understand.  

As a parent of a child with complex medical needs, there are just not enough words to describe what Camp Korey provides.  Navigating the world of rare medical conditions is challenging, scary, emotional, and lonely – for parents and kids alike.  Camp Korey has built a place of compassion, understanding, inclusion, and fun!  Just as kids can go to camp and build connections, parents can do the same!  We are given a chance to talk with other parents and caregivers who just get it.  We can talk about the ins and outs of insurance, the best and worst medical supply companies, bullying at school, 504 plans, and all things butts-and-guts that our kids face!  This is certainly not normal conversation for the moms I associate with at home, but it is welcomed and encouraged at Camp Korey.  At home, our entire world revolves around our medically complex kids.  Everything is planned around them and their needs.  Camp Korey gives the kids an exceptional summer camp experience while also providing parent-only programming to give us all a mental break and a chance to relax, knowing our kids are in the best hands.  

Our visits to Camp Korey are always incredible.  Without a camp like this, Carson would never get an opportunity to experience summer camp or build lifelong friendships.  I am eternally grateful that he has a safe, inclusive, and fun time at Camp Korey and we cannot wait for our next visit!  

Warm fuzzies, 

Darcey Huecker