Ella, 10, the youngest of our three children, is thriving. She has friends from school, in the neighborhood, and online. She sings in a community choir, and occasionally plays with her siblings.
Due to Ella’s disease, spinal muscular atrophy type 2, which directly affects her respiratory system, we are careful about protecting her from COVID-19. Currently, she and our other children are not allowed to have friends over. All three of them must stay home unless they have a medical reason. This presents quite a challenge for Ella and her siblings.
During the school week, the kids are engaged in remote learning. This takes up most of the morning and some of the afternoon. When school is over, they immediately turn to playtime. Ella opens her iPad and plays her favorite games with her friends online. They are able to meet with one another via video as they play the games.
After a while, Ella changes from video games to writing or coloring. She has become quite good at both and enjoys the solitude. Henry, Ella’s older brother by two years, loves to play video games on the TV. Ella will roll into the family room, bring her iPad, and watch him play. She cheers him on as he beats various game levels. Sometimes she asks me to put her on the couch with the dogs nearby so she can pet them while she watches.
Lately, Ella has been singing almost every day. She doesn’t know all the words to some songs, so her mom, Lindsay, prints the lyrics for her when Lindsay has a break from the online business she runs. Ella’s melodic voice has an amazing range. We hope she’ll continue with her singing lessons for a long time, as it is something she can do outside of school and play.
While we’ve been sheltering at home, Ella has had her sights set on dying the tips of her hair blue. We had tried this before but had little luck getting it right. So, we tried again. Ella was patient while we gathered the materials, and she looked forward to a successful — and colorful — outcome. Five hours later, she was sporting blue tips!
All in all, Ella does a good job sheltering at home. She has a positive attitude, doesn’t complain much, and finds things to do that she enjoys. She understands that getting COVID-19 could be fatal for her. She enjoys her friends, family, dogs, and time alone.
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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