img_0690Hi, friends! I’m Alyssa, and I’m here to share my personal story with SMA. In January 2013, I began this blog on a whim. Yes, that’s right- I had no experience in blogging, and truthfully, didn’t exactly LOVE to write (that quickly changed!). However, I was still compelled to share my story in some way, and blogging seemed like the best avenue.

I decided to do a bit of research on my topic before diving into the blogosphere, and a quick Google search on SMA led to a bunch of depressing (but, unfortunately, true) medical facts.

After scoping the internet, I realized I wanted to find something more than just the prognosis of this disease. I wanted firsthand stories- the good, the bad, and the ugly- of those affected by SMA because living with this disease is so much more than a page in an online medical journal can tell us. So,  that’s when this blog came to life.

Here, I chronicle my stories. Real, personal stories about living with SMA and how I’m learning (or have learned) to rise above everyday challenges while making the most out of the life I’ve been given. Although I have SMA, SMA doesn’t have me.

HERE’S THE SCOOP

When I was 5 months old, I was diagnosed with this neuromuscular disease. To put it simply, SMA is a progressive illness that affects all voluntary muscles such as walking, swallowing, breathing, etc. It is the number one genetic killer in infants under the age of 2 and more commonly known as the sister disease to ALS.

At the time of my diagnosis (April 1991), very little was known about SMA, and the doctors told my parents I would succumb to this disease around the age of two. There was nothing they could do to prevent the seemingly inevitable fate I received that day; so, with heavy hearts, my parents showered me with all the love they could possibly give before it was too late.

Although the odds were really stacked against me, as fate would have it, I have lived well past the age of two. Of course, that being said, my life has certainly been challenging at times. Living with SMA means living with daily obstacles and struggles and a constant fear of what could happen from day to day. But, just like any other difficulties we experience, how we choose to face them is what makes all the difference- it’s what makes life worth living. So, with that, I decided to choose happiness, love, and fulfilling life.

Today, I’m 26 years old, living in a small town in the smallest state with my incredible parents and pups, Vince and Wish (my service dog). I also have the most extraordinary brother, Adam, who’s now married to Krystina and living two miles down the road. I tried my very best to get rid of him, but I guess he just likes me too much to ever leave this town. 😉

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Photo credit: BJ Photography

In 2013, I graduated from Bryant University with a degree in Marketing and stumbled across my passion for writing along the way. But, don’t worry- I’m still putting my degree to good use!

On any given day, you will find me working for my nonprofit organization, Working On Walking, going on daily adventures with Wish, shamelessly singing along to Celine Dion, and spending time with loved ones. I am also in the process of releasing a full-length documentary, titled Dare to be Remarkable, about my life. It’s been three years in the making, and I cannot begin to describe how excited I am to finally show you guys just what we’ve been working on in the upcoming months! In the meantime, though, you can get a behind the scenes look at this project here.

Thank you for checking in to see what my blog is all about, and I hope you’ll poke around for a bit and continue to follow me on my journey. I love hearing from each and every one of you, so please reach out to say hello on Facebook. You can also reach me at alyssa@workingonwalking.org!

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3 thoughts on “ABOUT

  1. Another strong woman with passion .love to hear your experiences .myself diagnosed to have SMA, i was born with disability and doctors thought my weakness oriented with my disability .but i knew ,i have some other problem .later on find out it is sma.now i am 39 years old.i able to achieved my dream (becoming a medical doctor 2005).still i am practicing and dont know how far i can continue .

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