My boys were diagnosed in February of 1999. Lost, confused and utterly paralyzed I had no idea what to do first. First thing I did was find PPMD. A small group of parents largely collecting money for research via bakesales and canister campaigns. At the time, the slogan was find a cure by 2000. The logo was a little red stick figure boy. Why was I drawn to this organization? Because it had heart and amazing people, parents and children fighting this ugly disease and I felt at home.
My first PPMD conference was in UCLA in 1999. We had one presentation room maybe 75 to 100 parents were there. We stayed in the dorms. However, I met some other amazing parents, scientists, clinicians etc. and of course Pat Furlong. Through that first year and you all know, it was a struggle to figure out steroids, schools, PT,OT, night splints, supplements all of us sharing information. But it wasn't until the 2000 conference in Pittsburgh where the number of people doubled and I joined the Board and started to make lifelong DMD friends. How lucky am I?..We all share a common bond, we are working together and believe it or not sharing some laughs and good times as well.
But now as time has gone on, its not so fun anymore and what hurts the most is that our friendships are now being tested by the brutal reality that DMD is. Those 10 years ago seem like a long time but truly its been a blink of an eye. This year has been particularly rough on those of us from 10 years ago. Many have lost their ambulation, broken bones etc. and unfortunately some our boys have lost their battle. Its not that I want to share the scary awful part of this but I am at a loss now as to how to deal with hearing my dear friends lose their boys as most of our boys are all around the same age. It wasn't ever a thought 10 years ago but now we are facing it head on. I want all of us to stick together and not wander off losing touch and forgetting we came to PPMD to support each other. Through the hard times now and ahead we need to continue to stand together. Therefore, I am going to contact one of my PPMD friends today who I haven't spoken to in a long time and say, I am thinking of you..