An invitation to the community to experience joy together

Have you ever solved the world’s problems? I have. Well, sort of.

That’s what we say we’re doing when Mom and I get together for coffee with our friend Connie Chandler, a fellow SMA News Today columnist. Our deep conversations often feel like they provide answers to the problems we see in the world, and we do tend to find tangible ways to help each other or those in our immediate circles.

We were recently gathered around Connie’s table, sipping our drinks and munching on peach muffins she’d baked with a friend, when the conversation turned to the SMA community and how it’s evolved in our lifetimes. “You should write about this!” Connie told me.

“We should write about it together,” I countered. And so we shall. This column will share my perspective, and you can visit Connie’s column, “Caring Together,” on Tuesday to read her thoughts.

Recommended Reading

September 26, 2025 Columns by Halsey Blocher

Celebrating the people who got me to my 28th birthday

Once upon a time

Connie and I aren’t the same age (no, I won’t reveal the difference) and have had many different experiences, but we were raised with a similar attitude toward SMA. We had an appropriate understanding of our condition, which even medical professionals had limited knowledge of at the time, but it didn’t consume our childhoods. We had extraordinary health needs that required accommodation, but we also had happiness, friendship, interests, and childhood fun.

From left, Connie Chandler and Halsey Blocher enjoy coffee while solving the world’s problems at Connie’s house on July 12, 2025. (Courtesy of Halsey Blocher)

Having SMA type 1, a severe form of the disease, I had my fair share of illnesses, hospitalizations, surgeries, and disease progression. There were seasons where my health — or lack thereof — became my family’s primary focus, especially for my mom, who’s always been my caregiver.

Even when I was well, I needed to do breathing treatments, go to physical therapy, and use a BiPAP machine or ventilator at night to maintain my wellness. In an era when we didn’t yet have treatments, symptom management was the name of the game for SMA families.

But what was the reason for managing symptoms? Being able to enjoy a fulfilling life!

Outside of my medical care, I was a hardworking student who zipped around in my wheelchair between friend groups and activities. Our family was involved with the local homeschool community, our church, neighborhood friends, and others in the disability community. At various ages and physical ability levels, I participated in choir, adaptive horseback riding, cheer squad, art classes, and book club. Many of these doubled as fun physical therapy, too.

SMA was always present and required consideration in just about anything as I grew up, but I didn’t feel that was a bad thing. Being disabled was just an aspect of my life — my good and joyous life.

Turning the page to today

While it’s still devastating news, receiving an SMA diagnosis today looks much different than it once did. Whereas parents like mine were told there was nothing they could do for their babies but love them — a powerful medicine not to be underestimated — parents are now offered hope in the form of treatment options.

At SMA events, it’s becoming hard to tell which kids have the disease and which ones are unaffected. Connie and I meet children with the same condition as us who walk over to ask about our medical equipment that they don’t understand, and I love that. These kids are literal walking miracles that never cease to amaze me.

As the way of life with SMA shifts, so too does the community’s mindset toward it. Mostly, that seems like a positive thing. I wonder, though, what new pressures and obstacles young families will encounter in this new world that our families never needed to think about. As they are given new ways to fight SMA, will they also seek to live in harmony with it? Will the prospect of a normal childhood overshadow opportunities for joy in the present? Will they remember we’re here as a support network, even as SMA carries us down unique paths?

What’s next?

I don’t know what the future looks like for this community. I remember a time when I didn’t expect to witness — let alone experience — the day the disease became treatable, yet here we are. I always believed it was coming but didn’t realize I’d get to partake in it. So who knows what’s to come?

What I can tell you is what I hope for. I hope that every family with SMA, no matter how the condition manifests, lives with joy. I hope we all remember that life with a disability can still be good, give praise for miracles past, present, and future, and continue to love and support each other in all things. This is a hope that Connie, our families, and I share, and we want you to be part of that future with us. Maybe we can have coffee and change the world together.

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.