Ella is a social person. She loves developing relationships with others and is always up for a family night. She builds delicate yet sturdy friendships with people and navigates these relationships well beyond her years.
Having SMA presents challenges. For many years, Ella watched her siblings try different sports and musical instruments. She felt sad that she couldn’t partake in extracurricular activities like they did. This all changed when we discovered the group Young Naperville Singers. We signed her up to join the choir, and since then, she has been singing happily. She now has her own extracurricular activity and does well with it.
Recently, Ella has been watching the television show “America’s Got Talent.” She watches people singing and receiving feedback from the judges. She can sit for hours watching it, and seems fascinated with the idea of performing on stage.
One day, she approached us and said she wanted to sing in front of a lot of people. She said she even would be willing to try to get on “America’s Got Talent.” Of course, we support her dreams and did a bit of research.
We felt that the audition should be a song that people know and that shows off her incredible singing range. Then we thought that if she passed the audition, she could sing an original song. We began brainstorming ideas.
Ella wanted to write a song about SMA. She wanted to highlight not only the struggles SMA invites into her life, but also how she takes a positive attitude toward those struggles and makes the best of her life.
We sat with her and listed all of the struggles she has, from jealousy of able-bodied people (specifically kids) and all they can do that she can’t, to relying on help from others with some of the most basic things in life. She continued her list by focusing on the good things she has in her life, despite SMA. She noted friendships, close relationships with those who help her the most, and being able to communicate with people.
The idea of going on “America’s Got Talent” is in its infancy stage, and nothing may come of it. But the process that has started is opening Ella’s eyes to her life in ways that haven’t ever been explored. She is growing, maturing, and becoming her own person right before our very eyes.
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.
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