By Casey Sears Wilson
It is difficult to summarize an experience that we had no idea would be so impactful. However, I want to take the time to do so in a way that will permit anyone willing to take the time to read this to step into our grateful shoes and also to recognize the many gifted people that were involved in making our time at Camp Sunshine so welcoming, compassionate, empathetic, hopeful and empowering.
Camp Sunshine, located on Lake Sebago in Maine, is a year-round retreat for people with life-threatening illnesses and their families. The program is free of charge to all families. Yes, you read that correctly, our large family of 6 applied and was accepted to this amazing Camp from July 12-17. All that we had to do was get there.
Our son Caleb has DBA. He fortunately responds to a low dose of steroids every two days that somehow convinces his bone marrow to make enough red blood cells. Most people with DBA are diagnosed in the first year of life. Caleb did not show signs of anemia until he was about 17 months of age. However, some people are diagnosed at much older ages. What causes the red blood cells to no longer be made with the capacity for longevity is an ongoing question. Also, many who initially respond to steroids can either go into remission or even no longer respond and become transfusion dependent. Once again, there are no trends to explain who will follow which path. It really is a roller coaster, life threatening condition.
We pulled up to the Camp, not knowing what to expect and were met by a sea of people in yellow shirts, welcoming us to Camp Sunshine. Wonderfully disarming! These yellow-shirted, smiling faces (no, not minions) really made the entire camp experience over the moon fantastic. They helped us carry all our bags to our room, sat and ate with us and shared their own lives and listened to our stories, too. Caleb and Zac were in the tot lot while Jayna and Ziva were in the nursery group. However, these two groups all met in the same giant, well-equipped room. There were over 40 kids in this age group at the Camp – I am told that this was their largest group ever (in this age group). There were enough volunteers for a less than 1:2 counselor to child ratio. Our kids were treated like royalty. There were so many things to do!
The most empowering parts of the whole trip were the sessions with the doctors and researchers. Let me assure you, if you have donated money to DBA Canada or the DBAF, your money is being well used – and thank you! We heard from the top researchers in the field – MD clinicians, PhD researchers and MD PhDs – and were told the results of their work. I was impressed and moved by the passion with which these intelligent people present and work. Many of them, attending all the sessions given by their colleagues and then met one on one with the parents until past 11pm. I had the good fortune of meeting with two of the doctors (Dr. Alter and Dr. Smith) and will be receiving a conference call from another doctor who simply ran out of time to speak with each of us individually. Another doctor (Dr. Vijay Sankaran out of Boston) came over to speak to David and me after I asked a question in one of the sessions. He took personal interest in Caleb’s specific ribosomal mutation and answered a number of our questions. The conversation was win-win in so many ways. Both he and Dr. Alter have emailed us and we are in conversation with them. How awesome is that!!??
The actual science that we were exposed to was mind blowing. An MIT professor (Dr. H. Lodish) did some phenomenal work examining how prednisone affects red blood cell growth. The man was beyond brilliant and presented so effectively. I don’t feel that I’ve fully expressed or explained the information given in these sessions without coming off as a bit of a fan girl. These people were truly phenomenal.
We went to Camp Sunshine with some reservation. Our son is one of the fortunate ones. He is responding to low dose steroids. We did not feel as though we deserved to be there as much as others. However, we wanted to establish relationships with other families who live with DBA so that Caleb could have friends to relate to and talk to about his condition. We had no idea how much learning we were going to be exposed to and how helpful it would be for us as parents to connect with other parents on the same or similar journey. We’ve been a part of the online DBA community for over a year, but it is not the same as meeting with the families first hand. There were people from all over the USA, some from the UK, a family from Austria and 4 families from Canada.
The week was organized in such a way as to connect, learn with, eat with and share with the families as much or as little as we wanted/needed to. I was especially thankful for the Parents’ Dinner. The kids were taken care of in the evening while we had supper with only the adults. We spoke with a table full of wonderful people and heard their stories. Priceless. We really hope to return in two years’ time! Saying goodbye at the end of the week was sad. So many people felt so loved and accepted there. Many families face so many challenges. It is nice to support each other in community. What a blessing! What a great family vacation!! We are glad to be home though.
If you’ve made it this far – thanks for reading. If you’ve donated to the DBAF, DBA Canada or Camp Sunshine, thank you even more! However, please don’t stop. Even entering in the Diamond Blackfan Anemia Foundation as your charity to donate to when you shop on Amazon.com makes a difference.