Guest Voice: Helping my son live his best life with SMA is an honor
I am honored to have the opportunity to share my journey as a mom to an extraordinary human being. My son, Brandon Johnson, has faced immeasurable odds and lives a life that reflects resiliency and strength of spirit.
In my professional life, over the past 46 years, I have been a nurse, educator, and supporter of families caring for children with complex health and development needs. However, I didn’t truly understand how little I knew about parenting a child with a life-threatening, complex diagnosis until I became one of those blessed and challenged mothers myself.
As a family, we have endured the life-threatening emergencies that come with an unpredictable disease like spinal muscular atrophy (SMA). An innocent cold can turn into respiratory failure in a matter of seconds, keeping us on the edge of our seats and sanity. My precious son has suffered through the trauma of two serious falls, broken bones, and even extracorporeal membrane oxygenation, a form of life support. Yet somehow his strong spirit moves him forward to face the next day.
Precious memories and adventures
Brandon Johnson attempted to solve an escape room with his mom, Ronna Johnson, left, and best friend, Kira, for his 30th birthday in January. (Courtesy of Ronna Johnson)
Brandon, who was not expected to live past the age of 3, just celebrated his 30th birthday. For the past three years, he has successfully lived in his own apartment with the emotional support dog that he rescued, despite requiring 24-hour nursing care due to ventilator dependency.
Brandon is a published poet, having written his book, “Fragile,” while recovering from a traumatic fall that landed him in the hospital for a full year. He is a beautiful artist, currently working on his novel and comic book, and is pushing forward despite the limitations SMA has placed on him.
Although he’s an inspiration to many, including me, Brandon’s world remains smaller than I would like. A story like his can inspire so many more. His disease has never defined him, despite all the challenges it has wrought on his life.
What is the secret to his perseverance and positive attitude? “Being introspective, being truthful to myself about my limitations as well as my strengths,” he says. “Having a good support system also helps. People who will help me achieve the goals I set for myself, like my 30 bucket list for my 30th year of life.”
In May 2025, Ronna Johnson, left, traveled to New York City with her son, Brandon Johnson, to see a Beyoncé concert together. (Courtesy of Ronna Johnson)
Two of those bucket list adventures were checked off recently with me and his best friend, Kira: brainstorming how to solve an escape room, followed by dinner at a five-star restaurant.
Speaking of bucket list moments, we have rallied resources and support to fulfill Brandon’s dream of travel with three trips to Disney World and, more recently, a trip to New York City for a Beyoncé concert.
Those adventures required two vehicles for his medical supplies and equipment. We also had to rent a spacious condo that could accommodate all of the equipment, as well as a hospital bed and Hoyer lift. With the help of my husband and one of Brandon’s kind and dedicated nurses, the trips were wonderful experiences with many firsts for Brandon. We were so grateful to pull off what initially seemed impossible.
It has been an honor to raise such an amazing human. When I reflect on the sacrifices we have made to do so, they are remarkably dwarfed by the precious moments when we’ve been able to support Brandon through unimaginable medical procedures and decide with him to advocate for his independence and best life. What a journey! What a privilege!
Now I’m looking forward to our next adventures: a trip to New England with Kira and an Ariana Grande concert in Chicago. Stay tuned as Brandon’s world continues to expand to support his desire to live his best life.
To submit your own Guest Voice for publication on SMA News Today, please email your idea to our columns manager at [email protected] with the following included in the subject line: “Guest Voice: SMA News Today.”
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.
The post Guest Voice: Helping my son live his best life with SMA is an honor appeared first on SMA News Today.
