With continued support provided by newborn screening legislation, we will be able to get screening approved and implemented in all 50 states, so no other families will have to lose their children to MLD.
If we had MLD NBS in 1980 when Lindy, my first daughter, and in 1985 when Darcee, my third daughter, were born we would have avoided a six-year diagnostic odyssey, perhaps avoided the death of Darcee, and Lindy would likely not be terminal with MLD. Today, MLD Foundation has a pilot study underway for MLD, and with continued support provided by newborn screening legislation, we will be able to get that screen approved and implemented in all 50 states, so no other future family will have to lose their children to MLD, or any other disease that can be screened for and treated.
