An unexpected turn highlights the gap between SMA adult and pediatric care

I recently wrote about how I’ve been in the process of transitioning from a children’s hospital to an adult hospital. It’s meant saying goodbye to the place that knew my medical history better than anyone else, that helped keep me alive through countless challenges, and that understood my SMA diagnosis and the many complexities that have impacted my life.

So embarking on this new journey had been looming over me for months. But despite my fears, my first appointment at the adult hospital went surprisingly well. I left feeling hopeful that maybe this next chapter wouldn’t be as difficult as I had imagined.

Then came a plot twist, one I don’t think is being talked about enough.

At my first appointment with my new neurologist, we felt it was best for her to meet with my children’s hospital team. Living with SMA type 1 means I have severe health complications, so she wanted to discuss a comprehensive care plan for my needs and gain a better understanding of what my medical necessities were. However, after meeting and reviewing my medical history at length, the adult clinic didn’t feel fully equipped to manage my complex needs just yet. They believed I would receive better care by remaining at the children’s hospital.

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How far I’ve come, kind of

Just like that, I was back where I started. It was the end of a new beginning that I didn’t expect to come so soon (or at all, for that matter). How the plot twisted.

At first, I was relieved. The children’s hospital had been my safety net for as long as I can remember. So an immense weight was lifted from my chest and shoulders, one I didn’t even realize I was carrying. But as I sat with this decision, I realized what I was experiencing was so much bigger than me.

The doctors who made the decision were certainly not lacking in expertise. What’s more, these are some of the best doctors in the world. Their willingness to acknowledge their limitations, and that they couldn’t fully handle my health priorities, is exactly what good medicine looks like. But the truth of the matter is that many healthcare and support systems are simply not ready to properly care for adults with SMA.

To me, this is both a blessing and a curse. In my last column, I praised how far we have come in just the last decade with respect to research and treatment. Though I had my reservations about leaving the children’s hospital, I also considered it such a blessing to have this problem, to be an adult and have to navigate a whole new world of adult medicine. Because of the work we have done collectively as a community, more children with SMA are becoming adults with SMA. It is something many of us could have only dreamed of just a few short years ago.

But with that success and immense joy comes a new challenge: How do we build a future in which adults are properly cared for at scale? These may be gaps in the system, but they are also signs of progress. After all, the only reason we are faced with this problem is that people living with SMA are living longer, fuller lives. This is the kind of gratitude and joy that I don’t even know I can put into words.

At the same time, though, more attention needs to be brought to this matter. We need more conversations about how we can build better systems for people with any type of SMA and at any stage of life. The work has begun, but there is still a long way to go.

As I reflect on the last several years and the progress made, I can’t help but feel hopeful about where our community is headed next.

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.