Ella has lost five pounds over the past month, which has been the result of a dietary change. Before this change, she was primarily getting her nutrition via G-tube, while on an amino acid diet (known as an AA Diet) consisting of several nourishing liquids…
Since April, I’ve been writing this weekly column, and I’ve enjoyed every minute of it. Telling my story here on SMA News Today and sharing my thoughts on a wide range of topics has been liberating, rewarding and it has allowed me to connect with others…
By the time this gets published, I’ll have started the last semester of my undergraduate career, which is exciting … and terrifying in equal measure. People always say it goes by fast, and in some ways it does, but all I’ve been able to think…
If I asked you right now to tell me what your life’s defining moments were, what would you choose? Would it be something that left you feeling content and hopeful? Or would it be something more dark and gloomy? Each of us has moments when it’s almost as…
Ella sits in the waiting room every Monday at 3:30 p.m. as Ava and Henry receive their instrument lessons. Ava plays the violin and Henry the piano. While she waits, Ella either reads or plays on her iPad, practicing patience. At home, Ava and Henry are to practice…
Living with SMA or any kind of visible disability means that numerous awkward conversations inevitably will occur. It’s simply one of the things that happens when you’re in a wheelchair, especially when talking with kids or really, really dumb adults. Yet with all the odd comments and questions…
“When life gives you lemons, make lemonade.” We’ve all heard this saying. It has been repeated and engraved into our brains. It teaches us to take the bitterness of life and learn to make it sweet again. Rise above our adversities and choose to lead a positive and…
Ella has been in physical therapy (PT) and occupational therapy (OT) most of her life. She has had several therapists over the years, but our current ones have been part of our lives for quite some time. The relationships have blossomed to one…
As summer comes to an end and many colleges and grade schools are already in full swing, I’ve been thinking about how I made it through four and a half years of college as someone with SMA. It was far from easy, but it was still one…
We made it home safely after a long road trip! And we’re all pretty much exhausted. We’ve been on some pretty intense trips over the years, but this one might be our personal best: upwards of a thousand miles in less than…
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