Our 10-year-old daughter, Ella, who has SMA, loves to sing. She’ll ask her mother to print out song lyrics and then sit at the kitchen table and sing. Her voice is strong, and her pitch is perfect. She has quite a range as well.
During many months of quarantine, Ella has had online singing lessons with a group called the Young Naperville Singers (YNS) via the teleconferencing application Zoom. But she found it difficult to sing along because she couldn’t hear the voices of her peers on the computer very well, and everyone started at different times.
For the past two weeks, YNS wanted to try in-person rehearsals. So, we drove to the concert hall, I unloaded Ella from the van, and then placed her in her wheelchair. We sauntered up to an outdoor band shell, where colored plastic triangles were placed 6 feet apart on the grass. We put Ella’s mask on and found a place for her. Ella stayed in her wheelchair while the other kids spread out blankets to sit on.
From the band shell stage, the instructor spoke with energy and enthusiasm through a microphone. I stood at the back and listened to the children singing.
When the rehearsal had finished, Ella wheeled up to me with fervor. She was excited to sing with her peers again. She talked about the experience all the way home and said she couldn’t wait for next week. As long as the weather holds out, practices will continue to be held outdoors.
When we arrived home, Ella immediately began singing the songs she had learned. For the rest of the night, the house was filled with her voice.
We are grateful that Ella has found something she can do despite SMA. She’ll watch as her older brother and sister, Henry and Ava, play around the house, unhindered by a disease. They’ll cavort with the dogs and move with ease from one place to another. They’ll try different sports, ride their bikes, and run around the backyard, too.
Meanwhile, Ella has found an activity in which she can thrive. As her parents, we believe this is the most important thing for her to do at this age. She has the opportunity to excel at something, work with her peers, and gain a passion for something in her life.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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