I Have SMA and This New Treatment is Changing My Life!

Hi everyone! My name is Alex, and I am also known as Wheelchair Rapunzel on Instagram. If you follow @jhthebrand on Instagram, you may have watched my takeover a few months ago. For those of you who haven’t met me yet, I am 27 year old, originally from Chicago, but just moved to Florida right when the pandemic hit. I am a disabled content creator and advocate, and I’ve always been really passionate about disability justice and advocacy.

I’m proud to be disabled. No nuanced meanings, no hidden messages in-between the lines. Being a disabled person affects the way I interact with this world. It ebbs and flows during the different seasons of life — At the end of the day, whatever season I am in, my disability is always a part of the way I experience life. I do not wish for that to evoke pity but to make you think. Think about how other people exist in other bodies, and we’re all just trying to be happy and live the best lives we know how to with the tools we have. Unfortunately, disabled folks are largely marginalized, which means my toolbox to live the life I want can often be sparse.

How I became a content creator

Right after I graduated, I applied to various jobs in Chicago, and no one would hire me. I was in a really dark space during this time, and this is when I turned to social media just as a hobby and an outlet to express myself and help me get through this dark time. Just when I thought this would be a hobby, my account started to get some traction, and that’s when I started thinking about branding myself and spicing up my account, which is how @wheelchair_rapunzel was born!

I’ve always posted about my life and my disability, but I was really inspired after I saw a queer disabled share a post in their underwear; it was quite a risky post too. After seeing that post, I really reflected and thought this was the first time I had really ever saw a post like that on Instagram. This really empowered me because sexuality, dating, intimacy, and disability have always been a really tough part of my life that I have had to navigate along with all of the other good stuff, of course. So, after seeing this post, I felt really inspired to share a similar post and see how this resonated with my community and, more importantly, how I felt about it, sure enough, I absolutely loved it, and the response was overwhelming, so moving forward I wanted to make that a huge part of my brand!

Spinal Muscular Atrophy

Spinal Muscular Atrophy is something that you are born with, and it’s a genetic disease. The onset of the symptoms for everyone depending on what type of SMA you have. When I was born, no one knew that I had SMA; the doctors told my mom that I was perfectly healthy (healthy does not equate to being disabled!). I was this chubby beautiful blue-eyed baby, and it wasn’t until I was six months old that my mom started noticing something very slight. Whenever she would hold me up in the air (superman style!), my head would fall instead of staying held up in the air. For another instance, I was getting to the age where I should have started walking (I’m not sure of the exact timeline!) or at least trying to, but I never did. My grandmother ended up mentioning to my mom that I might have muscular dystrophy (I had a cousin with Duchenne muscular dystrophy). So with that, my mom ended up bringing me to many different specialists and having me tested for down syndrome along with a few other things. After tests coming back inconclusive, a doctor ended up recommending that I have a neurological test, and right on the spot, the specialist diagnosed me with Spinal Muscular Atrophy. At that time, 26 years ago, they told my mom that I wouldn’t live past my 6th birthday. As you can imagine, my parents were absolutely devastated hearing this news.

After about a week of feeling down, my mom went to the library and got every book and resource she could find on Spinal Muscular Atrophy. During her reading, she reached out to Families with SMA (now known as Cure SMA!). The president of Families with SMA at the time told my mom that the doctor who diagnosed me was an absolute quack, don’t worry, she is not going to die; she is going to be fine, and here are some resources! And he was right; here I am at 27 years old!

My New Treatment for SMA

Every now and again, I open my toolbox to an expected surprise. A little orange vile of strawberry-flavored resilience appeared in my toolbox one day. A new FDA-approved drug for my rare disease, Spinal Muscular Atrophy, Evrysdi. Of course, Evrysdi is way too boring of a name for my taste, so I dubbed the groundbreaking medication that I take orally every day the ‘twerk juice.’ This medication is fairly new and affects everyone with my disease differently, but the main goal is to stop the muscle deterioration my disease causes. Remembering the first day this medication entered my bloodstream and started altering my genetic makeup to make my body change sends a chill down my spine. At the age of 27, with a progressive neuromuscular disease, never in my life did I think I’d be gaining back physical abilities I haven’t had since I was 10 years old. Swimming independently, my disabled body free, moving in the water without the worry of gravity. Sitting on a toilet without needing to hold a grab bar. My lungs and breathing improving so much so that I am able to go underwater with my best friend when we are swimming like we did when we were kids. A new body. New experiences. Limitless possibilities. New dreams. Ebbs and flows. All the while — still being perfectly disabled.

This month, Disability Pride Month, I celebrate my community… and all the rest of the months too.

I am so grateful to Jillian and her team for allowing me to share my story on their platform. If you have any questions or would like to learn more, make sure to pop on over to @jhthebrand, as I’ll be taking over their Instagram stories today!

Alex Dacy – Wheelchair Rapunzel