As I look back on the last 10 days I can honestly say that I am mentally drained, emotionally recharged, physically exhausted, sad and hopeful for a cure for Batten disease all at the same time. I have cried tears of amazement and tears of sadness, tears of happiness and tears of frustration. First tears came at Noah’s finish that was so inspirational that I didn’t see many dry eyes in the crowd, even among people that had just heard about Batten disease that day. As I watched Noah run down the beach and slowly wade into the surf it became apparent to me that he was as amazed as I was. Not by the physical feat because he knew himself well enough that he knew he would make it, but by what it would mean to hundreds of families that fight for the kids and have lost that battle already. Afterwords I caught this picture of him that almost captures that moment…..
I always cry tears of sadness at some point during a conference weekend and this conference was no different. I heard a story from a mom who recently lost her daughter to Batten disease that tears me up at this moment three days later. I cried tears of frustration being introduced to another recently diagnosed child with Batten disease who reminded me alot of my boys, and as always I cried tears of joy when I watched the Saturday night parade of children. To see a whole room full of people shouting and clapping and to watch the expression of happiness on the children’s faces is something I look forward to all year long. One of the hardest things that I did this weekend was talk to a recently diagnosed dad because I remember the same shell shocked look on his face that I had 5 years ago after finding out that Brandon’s DNA test came back positive for juvenile Batten disease. I took away a piece of advice from Fred Weaver, a Batten dad who lost two boys to Batten disease. Although our family is far from “normal” our life is “normal” to us.
I am deeply encouraged by the advances in science that may reduce the incidence of Batten disease, by the dedication of the scientists that are searching for a cure and by the energy and drive that all our Batten families take into another year fighting this horrible monster.
Blessed, honored and humbled to have made it this far but so much farther to go….. This is a picture with Jacob Geer, I serve with his father Rob Geer on the BDSRA board of directors. Jacob has an undiagnosed form of Batten disease but that doesn’t stop him from flashing that smile…..