Hi there! My name is Alyssa, and I have a disease called spinal muscular atrophy. 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 of 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 a fulfilling life.

Today, I’m 26 years old and 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. 😉

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 the radio, 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.

Want to learn more about me? Here are 10 random facts you may not know just from reading my blog!

Photo credit: BJ Photography
Photo credit: BJ Photography

1. I’m quirky.

I’m probably one of the pickiest eaters you will ever meet (I still eat orally). On the rarest of occasions do you see me trying new food. I really have to be in an ambitious mood to taste test. I’m ALWAYS hot. I am THAT girl asking to turn the heat off when it’s -2 degrees outside. But, I absolutely cannot sleep without a fuzzy blanket…when I’m on my left side. Yes, I swear the weather is different when I lay on that side. Let’s see…I talk to inanimate objects all the time. I…never mind…you get the gist…

2. The way to my heart is through cupcakes and coffee.

It’s the easiest way to get me to like you. Seriously, feel free to…you know…try it out sometime. 😉

3. I’m a huge Disney freak.

That sentence should have actually read: “I’m a huge Disney freak and proud to be one, too.” When I was a little girl, my father promised me that I would never have more hospital stays than trips to Disney World. Needless to say, I’ve been to Disney A LOT! If you’re reading this and need advice for your next WDW trip, email me! I’m your go-to girl for all things Mickey Mouse related, and if I could, I’d talk about Disney all day, every day. I just can’t get enough of the happiest place on earth.

4. Speaking of obsessions, Taylor Swift is my girl.

Except she just doesn’t know it yet. But, we would be best friends. I have been a huge fan of hers since before she was even on the radio. We both have houses in Rhode Island. We have similar personalities (I think). Her first album came out on my birthday. We are over-the-top in love with Christmas. We love to write! For the sake of not boring you, I’ll stop here! But, Taylor, if you’re reading this, hit me up next time you’re in town, will ya?

5. I’m artsy.

I get my creative juices from my momma! I use a special paint program on my laptop to create pieces since I have very limited mobility in my arms. In fact, when I was younger and COULD use my arms, I drew cards for Cure SMA, and they would then sell them to raise funds for their organization. Now, I’m older and my technique has improved a lot- at least I’d like to think so. 😉 I’ll let you decide for yourself in the near future. Stay tuned!

6. I’m sassy.

If I’m being sassy to you, it means I feel truly comfortable around you. So, sass back! I can take it!

7. My life wouldn’t be where it is today without, what I call, the three pillars- family, friends, and faith.

My family showers me with love. My friends give me happiness. And, my strong, Catholic faith provides a light even in the darkest of times.

8. I’m stubborn.

In some ways, I think this is actually a good thing. Part of being stubborn means I always fight for what I feel is best for me, and I think that’s important if you’re in a situation like mine. Other times, though, it can get me into a little bit of trouble! I blame this on my zodiac sign. #teamScorpio

9. I have a bad habit of not finishing books.

I’m almost ashamed to admit this right now! You’d think that reading and writing go hand-in-hand. But, for some inexplicable reason, I never finish a book. I’m currently reading five at once right now…FIVE. And, as much as I wish I could tell myself otherwise, I’ll never get to the endings. Every time I purchase a book, I tell myself, “okay, this time will be different.” It never is…

10. I’m blessed.

And, I wouldn’t change a thing.

16 thoughts on “ABOUT ALYSSA”

  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 .

  2. You my dear sweet Alyssa, you will also, soon be a the most amazing aunt, to a beautiful little boy! Lucky him!! Love you so much! MFA

  3. Alyssa a children’s hospital still helping you out! That is amazing ! I can not even get one to call me back here in Florida 😦 …. I wish I never gave up with education years ago but that is a real long story I think I would love to be able to do the blogging like you but I’m hopefully lost…

  4. You are blessed. I just stumbled upon your article when I was feeling depressed with the direction my life is headed but I got a firm kick from depression land and I’m ready to tackle my issues head on.
    Thank you.
    May God always be by your side.

      1. Hi Alyssa
        Have you had spinal surgery ? My daughter is almost 5 going to get spinal surgery .. wondering about t

  5. Hi Alyssa! I am really enjoying following your blog! I have SMA myself and am embarking on the journey of Spinraza hopefully soon. I recently created a website to help people connect with other people exploring or receiving treatment. I am hoping to add your blog to my site and would love if you create a pin on the map. The site is http://www.treatmentpaths.com. Thank you!!

  6. Thank you for sharing. My daughter has SMA type 1 and is 7 yrs old. We are living up in Montreal, Canada. She has a similar determination and spirit as you 🙂 I am going to share your journey with her soon. And I know it will give her courage, strength and inspiration. Again thank you for putting yourself out there for others to find. Jeff

  7. Wow I just came across your blog while I was looking up the Spinraza drug, and your story reminds me so much of my sister’s. She too was told she would not make it to the age of 2 and she’s 29 years old now. Thanks for sharing your story – beautiful writing and pictures, btw. 🙂 My sis just started a blog too – love to see awesome women with SMA being brave and sharing their stories. Blessings to you in your journey.

  8. Hello from Sacramento, CA! Love your sassiness, by the way. Is there any other way to be??? I’m awaiting my fourth loading dose of “muscle juice” on October 2nd! The break from all of the poking will be nice, but wouldn’t give this blessing up for anything (unless it gives me a normal SMN1). You’re an amazing young woman and I love reading your blog! Stay strong in every sense of the word! (Isaiah 41:10)

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