It was time to take down the Christmas decorations. Every room was filled with boxes and coffee tables were covered with trinkets. We were working in the living room, which houses a large bookcase. We keep family photo albums, books, and special pictures in the bookshelf. As we were packing things away, Ella wanted to take a look at the albums.
She chose the one labeled “2010-2011” as she was born in 2010 and wanted to see herself as a baby. She started at the beginning of the album and was delighted to see herself taking her first bath. She laughed at some funny pictures until she came upon some photographs from the time when doctors admitted her to the hospital with the flu and RSV (respiratory syncytial virus). She looked through the pictures of herself lying on a hospital bed, hooked up to several machines, and taking breathing therapies. She went back and forth through the pages until finally she asked, “Why was I in the hospital so much as a baby?” I explained to her why she was there and what we learned about keeping a child with spinal muscular atrophy (SMA) healthy.
She continued searching through the album until she came to a picture of herself in her first stander. She noticed that her legs were straight while standing. She asked, “How come my legs aren’t that straight anymore?” I explained to her about contractures and how they can get worse over time. Her therapist recently discussed with us the idea of Ella sleeping in knee immobilizers to help stretch out the tendons and muscles in her legs. After learning about her contractures, Ella is now slightly more willing to use the knee immobilizers at night. We have yet to order them, but we’re hopeful that alongside her therapies they will help to stretch out her legs.
Ella wants to walk someday. She is convinced that with the positive effects of Spinraza (nusinersen) coupled with therapies that one day she will. Her future is unknown. Each day we work through the issues that bother her. We talk to her about SMA and the effects it has on her body so that she can understand what is happening to her. We encourage her to put in 110 percent when engaging in therapies, and we keep a picture log of her progress.
Who knows, maybe someday she will walk. And if she does, perhaps one day she will open the family photo album and see herself in a power wheelchair — and view the photos as mere memories.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.