Victoria Strong’s daughter, Gwendolyn, was born in 2007 and was diagnosed with spinal muscular atrophy (SMA) at 6 months old. Though medically fragile and disabled, Gwendolyn had a thirst for living life to its fullest. Gwendolyn died at the age of 7, but her legacy carries on. This is Victoria’s story.
I wish I knew to listen to my instincts and not be afraid to push. Gwendolyn was misdiagnosed for three months all because our neurologist didn't want to do the simple SMA blood test. She nearly died in those months and was very weak by the time we got her diagnosis. Those three months taught me to speak up, advocate, and not worry about hurting feelings.
My personality tends to not want to make others uncomfortable, and it was difficult for me in the beginning to challenge doctors who were clearly more educated about neuromuscular disease. What I learned, however, is that I knew my daughter better than anyone. If we hadn't gotten a second opinion, we would not have had seven magnificent years with our daughter.
The SMA world is entirely different now with treatments, but families still have to listen to their instincts and advocate for their children — especially because SMA is a rare disease and many medical teams simply do not have enough experience with it.
So first thing first is to seek out treatments. Fight, push, change hospitals and doctors if needed. Travel to SMA specialty centers and get Spinraza and Zolgensma as soon as you can. Getting treatments as soon as possible is critical for the most benefit. And once the dust settles and you get into your new normal, remember that your child will guide you. Don't let disability or ableist mindsets limit your child's potential. You can live a fantastic, fulfilling life with a disability.
One of the things we did throughout Gwendolyn's life was write regularly on a blog. We shared the good, the challenging, our grief, and our triumphs. Gwendolyn's life offered exposure to disability and taught both children and adults that physical ability does not define joy.
On the day of my daughter Gwendolyn’s diagnosis, her neurologist told me over the phone that there was, “No treatment. No cure. Nothing you can do.” He never said her name.
When your world turns upside down, you see things with a new perspective, and the doctor’s words — “nothing, nothing” — kept replaying over and over again. However, I decided that I didn’t believe that to be true.
While I couldn’t save my child’s life, that didn’t mean I should do nothing. There was so much that didn’t make any sense, from insurance and what was randomly covered and what was not, to hospital protocols, to all the ways our systems try to fit unique people into a one-size-fits-all approach.
And so, I began to challenge a broken system. My husband and I founded the Gwendolyn Strong Foundation in honor of our daughter. We pushed in all directions: research, clinical trials, legislation, newborn and carrier screening, lifetime caps, health care reform, disability rights and inclusion.
There are now multiple FDA-approved SMA treatments. The gene therapy research that we were one of the first to fund has now made it possible for babies born with SMA to walk towards bright futures. Parents no longer have to hear the words, “Nothing you can do.”
Play is a fundamental element of childhood. It connects us and teaches us how to interact in the world. I saw this firsthand with my daughter. Gwendolyn was profoundly physically disabled. However, she was one of the most social people I have ever known. She wanted nothing more than to be with other kids, and she always wanted to be doing what they were, even if she had to do it a little differently. Other children loved being around her; they gravitated towards her. I saw again and again how play creates bonds, allowing us to move through differences more easily.
Yet, the typical playground leaves out those with all types of disabilities. Playgrounds are required to be Americans with Disabilities Act (ADA)-compliant, but that bar is incredibly low. There is zero expectation that all children will actually be able to play or play together.
Our public playgrounds have not changed in decades. I believe that they should be more challenging, more innovative, more fun. That is what we are creating at Gwendolyn’s Playground; a fully accessible place that is more fun for everyone, because there is nothing OK about children with physical disabilities only being able to watch others play.
My Perspective articles discuss SMA from a specific point of view. We understand that everyone with SMA or caring for someone with the condition has a different experience. We aim to share as many of those viewpoints as we can. We’d love to hear from you. Please submit your proposal for editorial consideration to firstname.lastname@example.org. My Perspective articles don’t reflect the opinions of MyHealthTeams staff, medical experts, partners, advertisers, or sponsors.