Spreading a message of hope for SMA Awareness Month

To highlight SMA Awareness Month this August, I could go on and on describing the physical aspects of my life that occur every day. For example, I could talk about the aggressive respiratory care my mom and my nurses provide me to keep my lungs clear. Or I could describe how my nurses use a lift anchored to the ceiling to transfer me in and out of my bed, wheelchair, and shower chair.

All of this, and much more, is critical to keeping me alive. Yet, it doesn’t describe who I am inside, specifically, my faith, personality, and spirit. I’d like to discuss these traits to highlight the positive lives that people with SMA can have.

As a person with SMA, I am a dreamer with faith. I believe that through faith, whatever I imagine can become a reality. It might not happen today or tomorrow, but with enough research, planning, and sometimes fundraising, anything is possible.

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Planning a trip

One of my goals is to travel across the country. I have a wheelchair-accessible van, but I’ve learned that traveling long hours wears out my body. It’s also tiring for my mom and the nurses who accompany me.

I need them to stay energized during trips, which allows all of us to enjoy our vacations. If my nurses have a bad experience because they’re exhausted while traveling, they might not want to go with me again.

Ari Anderson says his smile fills those around him with joy. (Courtesy of Ari Anderson)

So far, flying has been out of the question. My wheelchair is extremely complicated, and I’ve heard too many horror stories of airline employees breaking power wheelchairs while putting them in storage.

I dreamed of an easier way to travel, and for the past year, I’ve been doing a lot of research to find a solution. Again, research and planning make goals and dreams possible.

One idea I considered was traveling by train. It might take longer, but at least you can stretch out. Trains also have fold-out beds that would allow me to rest.

While I was fantasizing about traveling by train, something even better appeared as a possibility. I learned that Delta Air Lines has partnered with the U.K.-based consortium Air4All to create airline seats that people can fold up and inward to accommodate a wheelchair restraint.

Amazingly, people would be able to stay in their own wheelchairs during flights. Talk about making my heart fill with hope and excitement while soaring through the clouds! Being able to travel across multiple states without exhausting all of us could soon become a reality.

While the design is still a prototype and no one knows when it will become commercially available, some things are worth waiting for.

Every day brings more hope

Hope may take a while to come to fruition, but it’s still hope. In the meantime, my faith allows me to believe that each new day can be better than the last.

People sometimes mention that I smile a lot. A big reason for this is my belief that good things can happen at any time. Also, my hope inspires hope in others. My mom says my smile brings her comfort. Even the director of my nursing agency said that when she first saw me smile, it filled her with joy and devotion.

Thus, for me, SMA Awareness Month means letting the world know about all the hope and joy you can have with SMA. When I was born in the early 1980s, I was given a life expectancy of just two years. Lifesaving medical care, combined with faith, hope, and joy, has gotten me to the age of 42. I’ve lived 40 years beyond my initial life expectancy!

Now that we have disease-modifying therapies to treat SMA, the disease’s prognosis has improved. We also have assistive technology to help those of us with SMA be more independent.

Let’s soar with excitement from being aware of all the hope you can have with SMA!

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.