Some people have asked if SMARD-1 is treatable. At the moment, no. There is nothing we can do for Dakin, though researchers are investigating possibilities. Just recently in Italy a successful stem cell transplant was done on mice with Dakin's condition, and there is a drug in the testing stage for Duchenne Muscular Dystrophy that may be applicable to SMA and so possibly Dakin's condition as well.
Right now, though, there is a movement to get the SMA Treatment Acceleration Act through Congress. A wonderful family with a beautiful daughter who has Type-1 SMA has started a petition to get the act moving--you can read about her and sign the petition here, so please take a moment to do so and help not only Dakin but the thousands of children suffering with SMA, DMD, Tay-Sachs and so many other debilitating diseases. And please spread the word! The goal is 50,000 signatures. Any research/treatment from this Act can potentially help quite a few disorders, all neuromuscular like Dakin's, so if we can get this passed it could help him. Please also take a moment to see if your legislators are on board with the act (you can check it here ) and print letters, or email them to get their attention. Thanks!!!!!