28 Years: A New Era For Those Living With SMA

Last Friday was my 28th birthday. 20 years past the age doctors thought I’d likely never see because of the effects of Spinal Muscular Atrophy.

Over the past month, I’ve been posting facts and stories of life with SMA for SMA Awareness Month. As these two events coincided, I’ve been reflecting on what all of the information I’ve been relaying to you means; both for the last 28 years where for so long it was scarce, and the next 28 years that will see so much benefit and change because of it. You see, they represent for many like myself, what aren’t just info graphics with some sciencey stuff on them, but rather everyday life. They are the realities my family and I have navigated through for 28 years, trying to find some sense of “normal”—whatever that is. As we have, family and friends simultaneously—since I was in the first grade—planned fundraisers and advocated for funding for research on treatments almost every year. It hasn’t been easy. Trying to plan events while also trying to manage crazy schedules and medical needs is exhausting. Sometimes you wonder if it’s all really making a difference and if it’s worth the effort.

Me, around a year old.

However, through those efforts, my family, friends and I have raised over half a million dollars towards SMA research over the past 28 years. And with 3 treatments now approved, that work and those funds are paying off. While there’s still so much left to be discovered—more effective treatments, a CURE—I believe it has ushered in a new era for those living with SMA and our families.

An era of living.

3 years old. Can I get any more adorable?

First, I should say that I don’t mean this in the sense that those of us living with SMA have not really been living up until now. It is quite the opposite. All you need to do is check out the social media of myself, Shane Burcaw, Alyssa Silva, or countless others who live with SMA, to see that I use the phrase “living with SMA” because that is exactly what we do. But as these treatments become more widely available, for both newborns diagnosed and older people with SMA like myself, we can begin to take a bit of a deep breath (thanks to improved lung function) and live in a new way.

For those with more severe forms of SMA, I mean that quite literally. Where there was once very little hope, there is now hope abounding in the fact that life is very much a reality. Children who likely never would’ve seen their second birthday are not only living but thriving, and in some cases even walking.

For people like myself who have been living our lives with SMA for quite some time—with no lack of fulfillment—these treatments provide us that deep breath and new paradigms of thinking about our lives. In many ways, we’ve been “living on borrowed time.” Thanks to medical technology and improvements in the daily “maintenance” care, we’ve been able to beat the odds and live great lives while we were at it. However, while death certainly doesn’t consume us or our thoughts—or at least not for me—it has been a constant reality, lurking somewhere in a cold, the flu, or pneumonia. We’d beaten the odds this far, but how long will it last?

6… the age of running over soccer balls and almost tipping over my chair.

We now, thanks to these treatments and the ones around the corner, can begin to let go of those thoughts. We can know the progression of SMA can stopped and even reversed. We can live with the knowledge that the next cold we get, we’ll have a better shot of getting over. We can begin (and have been) asking and answering, questions like what does it look like to be married with SMA? What does it look like to be a parent with SMA? What does a career look like with SMA? Or retirement? In short, we can begin to simply live.

Of course, there are still going to be challenges in our future. For us, we will most likely live with the realities and effects of SMA for the rest of our lives. They may be lessened, but they’ll still be there. And honestly, I’m okay with that. Who ever said life was going to be challenge, or struggle, or pain free? If someone did, they were lying. No, our lives, just like yours I suspect, have been and will continue to be a crazy, messy, beautiful—dare I say remARCable?—journey of failure and victory, challenges and perseverance, struggle and strength. It will be a journey of living. And to quote Robin Williams in Hook…

“To live… to live will be an awfully big adventure.”

11 or 12? We stopped keeping track at this point.

So, though SMA Awareness Month has ended, our fight for more awareness, funding, treatments, and a cure will continue on. In this new era of us living with SMA, these next 28 plus years, it’s our mission to leave a world where no has to live with SMA. Because, isn’t that the goal for all of us; to leave the world a little easier for those who come after us? I hope you’ll join me in that journey.

28 in 2020.

Well, those are my remARCs. I hope they in some way, big or small, might have resonated with you. Whether it made you laugh, cry (I hope not too much), smile, or maybe think about life from a different perspective, I hope you take something away from this article that makes your day even the slightest bit better. I’d love to hear your remARCs as well. Feel free to send me an email at myremarcs@comcast.net, or leave a comment on the My RemARCs Facebook, Twitter, or Instagram pages… unless you hated it. In which case, why are you even still reading this? Hope to see you back here soon. Until then, be well and live remARCably.

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