Camp Sunshine

Soon after the benefit, Bridget, Finn, and I traveled to a place called Camp Sunshine in Maine. It was an invaluable experience--hard to put the right words on it.

Every other year, families contending with DBA meet at Camp Sunshine to share their experiences, questions, frustrations, and hopes. For the children, it truly is like summer camp. Volunteers come from all over the U.S.A. to give of their time, acting as camp counselors for the children, watching over them and leading them in exciting activities so that the childrens' parents can attend numerous workshops and seminars conducted by leading DBA researchers and doctors.

Being a baby, Finn wasn't ready for archery or kayaking, so a kind woman who traveled from New York to volunteer cared for Finn each day from morning until late afternoon. The instant we met her, we knew Finn was in GOOD hands. It was the first time we'd ever left him with anyone other than family. Thanks to her, we were able to concentrate on the seminars, which covered everything from ongoing research into curing DBA, improved treatment methods, and comparative analysis of DBA patients and otherwise healthy humans with regard to life expectancy, growth and development, and susceptibility to diseases like cancer. It was a whole lot of dense, complicated, and frightening information to synthesize and absorb.

In addition to the seminars, there were a few facilitated discussions that allowed parents of children with DBA to meet and share their experiences, fears, frustrations, and hopes with other people who actually knew exactly what the other parents were going through. During the first workshop, we were to introduce ourselves, describe how we learned our child has DBA, and share how we've been treating it. There were a number of stories that sounded almost identical to our own. It was difficult to keep from getting all choked up hearing story after story so similar to Finn's. Because DBA is so rare, it was the first time Bridget or I actually met another person besides our doctor in St. Petersburg who knew someone with DBA. We keep in touch with several families from Camp Sunshine and rely on them frequently for advice and support.