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Day 12 of 31 Days SMA Topic: Watching My Child With SMA Grow This is Lauren and David Morus’s ( @morasaurusart ) story: Grace is a 2-year old girl on a unique journey. She was diagnosed with SMA Type 1 shortly after birth. Thanks to Zolgensma and Spinraza, Grace has a chance at life. Without them, we know that Gracie might not be here today. She’s starting to regain some motor functions, though she has a long way to go. She needs a trach and ventilator, G-tube, has minimal neck and upper body strength, and can’t swallow or cough on her own. Nonetheless, she continues to show subtle feats of strength. She is part of a group of children who are rewriting history about what it means to have SMA. Grace’s future is still uncertain, but our household is full of hope. As parents, the hardest part is navigating the changing reality of this disease. When one of our fantastic home nurses took a course on SMA for professional development, she found it was very out-of-date and focused mostly on palliative care. Yet, we have an active schedule for Grace that includes time in her stander, activity chair, power chair, tummy time, and now – with developing respiratory strength – time off her ventilator. There’s no playbook for what we do, and with that comes waves of doubt and anxiety. The research and advocacy is worth every second. The growth we have seen in Grace may be subtle to others, but it couldn’t be bigger for us. She’s filled with personality. She shows a wonderful smirk when she gets the opportunity to gently knock things over, and like many kids, she’s usually more interested in things that aren’t toys. Between sets of cough assist, Grace plays with the burst of air that comes out of the tubing. She’s figured out how to splash in the bathtub, and now we deal with a puddle in the middle of the room. Grace uses an eye gaze device and modified hand signs to communicate, and it’s so exciting when she can communicate something new. The first push on her joystick to move her power chair was so satisfying. We are proud parents, and we’re thankful to live in a world that has so many people advocating for our child. #SMAAwarenessMonth #SMAAwareness #31daysofsma2020
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