How a simple page turn became a big victory

As much as I love to read, sometimes the physical act of doing so isn’t easy. Books quiet my mind. They transport me to another world where hospitals and doctors’ offices aren’t the norm. However, my hands and fingers don’t always cooperate when I want to read. Something as simple as turning a page on my Kindle can feel like an impossible task because of spinal muscular atrophy (SMA).

Living with one of the most severe forms of SMA means my physical abilities have been extremely limited all my life. I can’t walk, have difficulty breathing and swallowing, and experience chronic fatigue from muscle weakness daily. On days like this, something as minute as tapping a screen on an e-reader can feel daunting and exhausting. At the same time, though, it can also be a challenge to think outside the box.

This summer, I was feeling discouraged about my limited ability to read from my Kindle. Though it sounded simple, all I ever wanted to do was sit on a beach and get lost in a good book. At the beach, however, I have to lie in a beach chair that isn’t the most comfortable. In that position, I’m unable to hold or balance my Kindle on my arm, as I typically do at home.

I thought a Kindle page-turner remote would solve my problem, but when I tried to use it, I wasn’t strong enough to push the button.

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Yes, I can adapt

Just as I began to feel defeated, something dawned on me. All of my life, I’ve had to adapt to my circumstances. I’ve had to find creative and innovative ways to make life work for me and my limitations. Accessibility was never handed to me on a silver platter, but that didn’t mean I couldn’t forge my own path. Only when I refused to settle for how things were did I realize the infinite possibilities that lay before me. My Kindle dilemma was no different, and when I realized this, I knew the one person who could help me: my brother, the electrical engineer.

The touchpad remote Alyssa and her brother designed. (Courtesy of Alyssa Silva)

Together, we developed a new concept for my Kindle remote. I explained to him how I was unable to push the button, but that something like a Micro Light Switch or touchpad would better fit my needs. From there, he gently pried open the remote, looked inside at the buttons and wires, and knew exactly what to get. I was so giddy about this project that I overnighted all the supplies he needed.

Within a few days, I had my first prototype. After cutting wires and soldering things back together, my brother had replaced the button with a touchpad so sensitive that it barely required touching. In fact, I barely had to lift a finger. A tiny, gentle swipe over the sensor was all it took to turn the page. He then used a 3D printer to create something that would encase the touchpad.

I nearly cried the first time I used it. To think that I almost gave up on my dream of reading at the beach when all it took was reimagining what accessibility could look like.

These days, my Kindle comes everywhere with me — the beach, someone’s house, a doctor’s office, the hospital — now that I don’t have to worry about whether I’ll physically be able to hold it and turn the pages. Although it may sound trivial, to me, it’s a meaningful victory. SMA has robbed me of many experiences in my life, but this small device represents a piece of freedom I never had before. It represents the creativity, the people, and the persistence it takes to keep SMA from having the upper hand.

It’s proof that no matter what situation feels insurmountable, I’ll always find a way to adapt.

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.