August 9, 2018, changed the course of my life completely. Standing in a doctor's office with my 16 year old son, hearing the words Muscular Dystrophy echo in my ears. I stumbled out to the parking lot vigorously googling information and realized the symptoms fit my 16 year old (Gabe), but they fit my 13 year old, Charlie, even more. After months of seeing every type of doctor and specialist you can imagine, their DNA results came back as SMA. Spinal Muscular Atrophy, a rare neuromuscular disorder, characterized by loss of lower motor neurons and progressive muscle wasting, often leading to early death. There are different types of SMA. SMA 1 has a life expectancy of 2 years. Fortunately, Gabe and Charlie have SMA type 3. Gabe began using a cane this December and Charlie’s progression has just began in his feet and neck. However, there was a new drug introduced in 2016 called Spinraza. Spinraza stops/slows the progression of SMA. If the boys disease had been caught earlier, Gabe would not be using a cane and his muscles would have been preserved at a much earlier age. However, because SMA is rare, and certain forms present later in life, often it isn’t caught until the muscles have severely wasted and atrophied. We do feel very lucky because had my boys had SMA 1, they would likely not have made it to their second birthdays. However, with Spinraza being put on the market in 2016, it has saved lives of a number of children and stopped the disease progression for a number of others. Before 2016, there was no treatment, so screening for this disease didn’t matter because there was no help. Now there is. 1 in 40 people are carriers for SMA, so even though SMA is a rare disease it’s one of the most common genetic diseases with 1 in every 6000 to 10000 children being effected. Alabama has averaged somewhere around 60000 live births since 1973. That’s anywhere from 6 to 10 children every year in Alabama that have this disease. Now that there is a treatment option available that can preserve their quality of life, we should screen for SMA. Alex Azar, U.S. Secretary of Health and Human Services already has added SMA to the recommended newborn screening list this opens the door to us at state level. How many children can we save from wheelchairs? How many lives can we save by catching this earlier? For me just 1 would be enough. It should be mandatory in the state of Alabama to screen for SMA. If we can preserve the quality of lives in these children early on we should.