My daughter Ella was diagnosed with spinal muscular atrophy type 2 at 14 months old. Our doctor offered us the hope that although there wasn’t a treatment or cure at the time, there was equipment we could use and therapies we could engage her in to give her a chance to survive.
Ella is now 10 and thriving. She can be independent with many tasks and is always willing to work hard to improve her strength. She has a good attitude and advocates for herself.
Now that there is a treatment for SMA — Spinraza (nusinersen) — Ella delights in going to the hospital to have her injections, because she knows it will physically benefit her. She wakes up early in the morning on Spinraza days and looks forward to spending time with the person taking her to the hospital.
We have noticed that since starting Spinraza treatments, Ella is stronger. She can now lift a full glass of water to her mouth to drink, which she couldn’t do before. She can also raise her arms over her head, lie on her stomach with her head up, and roll over on both sides.
Lately, Ella has been learning virtually. She also has physical therapy virtually, twice a week. Ella’s mom, Lindsay, gets down on the floor with her and helps her through physical therapy while therapists give directions via computer.
The other day, Ella asked if she could sit on the floor with the couch behind her back to be closer to our dogs while her brother played video games. I obliged and set her on the floor with her legs bent in front of her. I left the room and returned a few minutes later.
Ella called for me and said, “Watch this!” To my surprise, she lifted her hips and buttocks off the floor using her arms as anchors. She lifted herself up about an inch and held it there. She wore a proud smile. I was astonished, because I’ve never seen her do anything like that before.
The next day during physical therapy, she showed her therapists what she could do. They were astonished and proud of her, too. The therapists praised Ella for her hard work during therapy and encouraged her to continue with the exercise.
We’ve come a long way since the day of Ella’s diagnosis. We’ve watched Ella grow into a blossoming child full of life and laughter. We’ve watched her go through several surgeries to help prevent SMA from ravaging her body. We’ve watched her become stronger and build confidence.
We are grateful for all the support we have received over the years from so many different people.
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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