These sisters began life the same way

These sisters began life the same way…nuzzled into their mother’s arms staring at a Mommy and Daddy whose hearts were bursting with love and joy. Their parents had dreams for their daughters: running and twirling in tutus, pig tails, prom, a wedding. These dreams were shattered when they heard the words Spinal Muscular Atrophy for the first time.“M” was diagnosed at 4 months old. Her parents had never heard of SMA until that moment when everything changed. Over the next few months they watched while their sweet baby girl became weaker. In this picture, at 7 months old, “M” was only able to move her forearms a little. She had lost the ability to hold up her head, move her legs, eat, and play with even the lightest baby toys. She didn’t even have the freedom to turn her head. One week after this picture was taken, her parents were left with empty arms as she was flying free in Heaven. While pregnant with their second daughter, they again heard the words Spinal Muscular Atrophy. Their hearts broke again at the thought of losing another baby far too soon. But, for “B”, her course changed when at 3 months old she received her first injection of Nusinersen. Her little sister passed away at 7 months old but at that point, thanks to the treatment she was receiving, “B” could move her forearms and play with regular baby toys. She could hold up her head, lift her legs in the air, eat baby food, and roll from side to side. To her parents’ surprise, “B” was even starting to sit up with very little help. Today “B” is able to sit up independently. She can stand with minimal support and has even been able to propel a manual wheelchair. She continues to get stronger every day. “M” and “B” are sisters both born with SMA Type 1 who will never play together, never twirl in their tutus together, or never argue over who gets to play with that dolly. Their paths were very different. The one difference between these two sisters is Nusinersen. All children and adults with SMA deserve this treatment now. There is no time, every day two more babies are diagnosed with SMA and another becomes an angel. The natural course of SMA is undeniable…until now. Nusinersen can change the lives of those with SMA and we want approval NOW.‪#‎TheFASTMovement‬ ‪#‎LetThemLive‬

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