Family and friends, I’m going to need your help. With Thanksgiving right around the corner, I was hoping we could all take the time to give back and help out a cause- something I have been doing now for the last fifteen years. I promise it will only take a couple of minutes.

As a little girl, I can remember my parents packing a bag and making a trek up to Boston Children’s Hospital to see a special team of doctors with me. Given that this disease was progressive and untreatable at the time, there was never any good news from these appointments. I remember always feeling sad and fearful, so in an attempt to make me feel better, my parents would take me to the hospital gift shop and let me pick out a stuffed animal. It was the only thing that made me smile on those days.

Almost two decades later, those same feelings of sadness and fear still exist inside of me. I’ve lost the ability to hand write. I’ve lost the ability to feed myself. I’ve lost so much energy. And, just in the last six months, I’ve very slowly begun to lose the strength to breathe on my own. It often makes me wonder what’s next. This isn’t something that is meant to scare you. I love my life and wouldn’t trade it for anything, but it’s important for me to share a glimpse of reality with you. However, there is a silver lining to my story here. Unlike the little girl who only had her stuffed animal to cling on to underneath fluorescent lights and four white walls, I now have something more powerful and promising to cling to- hope.

There’s currently a drug called SMNrx which has been proven safe and effective for individuals with SMA. Although this is incredibly promising news to the SMA community, we now have the biggest hurdle to face: getting this drug approved by the FDA. The FDA approval process can take years, years that many of us don’t have left, which brings me to why I need your help. An Acceleration Approval option is available to us, we just need our voices to be heard by the right people. You with me, guys?

Below is an email template. Please copy and paste it into a new message, fill out your information, and send it to the email addresses listed here. That’s all I’m asking you to do- see how simple it is?! Imagine a world where SMA can no longer take away the things in life so many people take for granted. Imagine a world without SMA.

Please send the email to:
In the “Cc” line please enter: INFO@THEFASTMOVEMENT.ORG so that we can track how many emails are sent.
(In regards to patient age and type, I’m 25 and have type 1)


I guess you could say a part of me would have appreciated receiving a little piece of advice from The Universe telling me to just stay in bed when I woke up this morning. But, then I wouldn’t have been cornered by rooster, reminded that I really don’t like birds, laughed at the essence of timing and how it’s never really been on my side, brushed up on my español, and acknowledged just how much I love my crazy, beautiful life. Let’s start at the beginning, shall we?

I went to my favorite country store/coffee shop in town this morning to kill some time before a meeting. This place is located on an apple orchard with a farm-like feel and is really the perfect place to grab a coffee and a pastry and just relax. So, there I was, sitting with my friend in the greenhouse, minding my own business and sipping on a chai, when suddenly Wish started ferociously barking at a rooster that decided to waltz in right towards us.

With nowhere to go (I was sitting in the back) and Wish getting more uneasy, my friend ended up having to chase the little beast out of the room. Twice. Flustered, yet very relieved, I was then approached by a woman who asked if my friend was a caretaker or relative. Because how could I ever possibly have friends, right? Her reaction to finding out we were friends upset me, but I brushed off her ignorance for the time being, decided we needed a change of scenery, and headed outside only to then have a bird poop on me.

Despite the morning mishaps, I was way ahead of schedule and figured what better way to turn this day around than by arriving early, thirty minutes to be exact, to my meeting for once. It was a rather rough morning, but I decided to embrace my inner Taylor Swift and just shake it off. So, that’s what I did, and as I did one final check on my phone before heading inside to our meeting place, I noticed I had a text that read: “hi meeting canceled.”

It was a good effort on my end, but clearly not good enough. That’s when I finally decided to just throw my responsibilities out the window, call it a day, and enjoy this gorgeous Indian Summer we’re having in the Northeast. And, I did. Aside from having the most perfect November afternoon at a park by the bay, I also had the opportunity to brush up on my Spanish skills when a passerby asked my friend if I was her “hija”. Yes, that’s right, the woman asked my friend, who’s the same age as me, if I was her daughter. Soon after, we left the park laughing at how bizarrely eventful this day was.

Through the chaos in which I call my life, there’s always a lesson to be learned. Today, I learned a few, and I thought I’d share them with you.

1. Be grateful for the people in your life and never take them for granted. I’m incredibly fortunate to have friends, to know what it’s like to be cared about, and to always have a shoulder to lean on. Not everyone has that kind of person in their life, but I do, and I should feel more appreciative.

2. Sometimes life doesn’t go according to plan. So, roll with the punches, create a better plan for yourself, and put on some Christmas music and shamelessly blast it down the highway. Because Mariah Carey Christmas will never get you down.

3. Don’t forget to laugh at your crazy, beautiful life.

Birthdays take on a slightly different meaning around here.

I was just shy of turning six months old when my parents received my grim prognosis. With very little access to the Internet, they were told very little about this disease and were left in the dark to care for their terminally ill daughter. Because of the severity of my condition, they were told I wouldn’t live past the age of two. However, as the doctor left my house that one dismal day in April, he looked at my parents and said, “but, I believe in miracles.”

With heavy hearts, my parents decided to have a birthday party for me a few days later- to celebrate my six-month mark. They feared I wouldn’t live to see my first birthday; so, they bought a cake, invited over a few family members, and through tears and profound sadness, found the courage to laugh and smile that day. What they didn’t understand yet, though, was that day would be the beginning of many more birthday blessings (and cakes!) to come.

Yesterday, I turned 25 years old, and I think 25 is one of those years where you kind of just stop what you’re doing and take a minute to reflect. Some may call this birthday the time for a quarter-life crisis, but that didn’t happen here. Unless you consider impulsively chopping your hair off to be a quarter-life crisis, then in which case, yes, I totally had one. But, I think many people consider 25 to be that age where you literally question everything in existence and everything you’ve ever believed in and wonder where the hell your life is headed. That just wasn’t the case for me.

Instead, I woke up yesterday, looked down at the floor at my birthday Wish (who inconsiderately woke me up at 6am), and felt grateful. I looked back at my life and thought about every moment that led me to the here and now. Every illness that kicked me down but only ended up making me stronger, every accomplishment I never thought I’d make in fear I wouldn’t see tomorrow, and every person who has made my life a little more special has all led me to the person I am today. This isn’t a quarter-life crisis at all, I thought. It’s a quarter-life blessing.

So, yesterday, we celebrated. I gathered my closest friends, cleaned up the pooches, and hosted a Disney/WISH Upon A Star/Vince Charming themed party- photo booth obviously included. There was no place in the world I’d rather be than with the people who have always loved me and seen right past my disability for who I really am. Compared to decades ago on that fateful day in April, yesterday’s birthday celebration took on a whole new meaning- one that will be remembered and cherished for a lifetime. As I went to bed after having the most remarkable day yesterday, I realized the miracle isn’t that I’ve lived to see another year. The miracle is that I was given the best friends and family to share another year with.

From the bottom of heart, thank you for every birthday text, email, and Facebook post. You guys have never made 25 look so good.


Day Eight

Today is October 4th, the day that I have returned home from Alpharetta, Georgia. When I received that very special phone call from Canine Assistants on New Year’s Eve, they said this would be the day I’m returning home, and that’s when I knew immediately. This whole experience was meant to be a part of my journey. Thirteen years ago today my life changed for the better, and the very best furry friend a girl could ask for came into my life. His name was Fred, and he was my first service dog. Now, on October 4th, I am starting a brand new journey with Wish, an ever so gentle service pup who has kindly picked me to be her forever home. Some may call this a coincidence, but I see this as a sign.

These two pictures you are looking at were taken thirteen years apart to the day…in the very same location with (ironically) the very same autumn decor. Even after Fred’s passing, today’s return home with a new service dog was an obvious sign that he is still watching over me from above. From the very moment he left this earth, I see little pieces of him throughout the day. And, just yesterday, I received this text from my brother: “God just gave us a little sign that Fred is still around and looking after you. I was waiting in line at Pet Smart buying Wish’s bowls and treats and the woman in front of me was with her dog named Fred! How weird is that?”

It’s not weird. It’s just Fred reminding us that he’s always going to take good care of me and Wish from this day forward.

Welcome home, my little love.



Day Seven 

We often go into an experience with certain expectations for the outcome. We create these scenarios in our heads and expect them to unfold the way in which we intended. But, oftentimes, The Universe has a funny way of working itself out, you know? You eventually come to understand that maybe, just maybe, the unexpected is far more meaningful and wonderful than what we had ever expected before.

Today, Wish and I graduated from service dog training camp. That’s right, cue the Graduation Song by Vitamin C because we have officially turned our tassels to the other side- in the metaphorical sense of course. But, just like how any other graduation goes, emotions ran wild. Well, at least for me and my mom.

As we went to get on the bus back to the hotel for the very last time, Wish refused to leave. She plopped herself at the bottom of the stairs as if she knew she wouldn’t be coming back. After some convincing and tugging at her leash, she reluctantly came on and went straight to her momma’s lap. I am eternally grateful to all of Wish’s trainers and foster family for raising this girl into a well-mannered service dog. I’m also happy to be going home, but I think if I could, I would’ve plopped myself at the bottom of the stairs, too.

You see, I began this trip under the impression that I would go to class, do my thing, then head back home with a new companion. Sure, I did that, but there was SO much more than what I was expecting. When the bus turned left out of the Canine Assistants farm, a bittersweet feeling overcame me, and that’s when I realized: I met an exceptionally remarkable group of people down here, (including a few with Spinal Muscular Atrophy!) and I was honestly going to miss them. You don’t really expect that to happen, you know? After all, it’s only seven days, and these people are all complete strangers to you. However, that just wasn’t the case here.

Goodbyes are never easy, and I was reminded of that today. With gratitude in our hearts and melancholy eyes, we said goodbye to the dedicated trainers and staff, to the amazing foster families who selflessly cared for our dogs and socialized them for the past 14-18 months, and to each other. I’ll never forget this week, and most importantly, I’ll forever carry each person here in my heart. I wish you all the best.

See you tomorrow, Rhode Island. Wish can’t wait to meet you.



Day Six

Ever since bringing Wish home on Tuesday, I have not written a blog post without this girl laying on top of me somehow. Today, she’s on my legs and slowly pushing me off this couch. If for some reason this post ends mid-sentence, it’s because she’s officially pushed me off.

There isn’t much to report on from today’s class. The two of us worked on the “go get help” command, and she seemed to catch on pretty quickly. Like I said yesterday, she’s a total nerd so I’m really not that surprised. Afterwards, we studied for tomorrow’s final exam and then went home.

It’s been a long week down here for sure. Of course I would not trade my time down here FOR ANYTHING, but lack of sleep and all the crazy shenanigans it brings is slowly starting to make its way into our lives. For example, while training with Wish just moments ago, my mom was putting treats in my lap every time she responded well to my requests. Without thinking and only operating on a few hours of sleep, she accidentally fed me the treat. Ah, yes, that salty morsel went just as quickly out of my mouth as it did into my mouth. Thanks, mom. I guess I took this bird feeding technique to a whole new level though. You’re welcome, Wish.

Okay, so about this picture: Wish and I spotted this really awesome tree at the hotel yesterday and decided to go take our first formal picture together. While we were getting ready for our mini photo shoot and totally having a moment, my mom managed to capture this. You can truly feel the connection beginning to form in this picture and how comfortable she already feels around me. (Fun fact: I received Wish’s vet records and she and I weigh exactly the same. However, we’re both ladies and cannot disclose that number to you. ;) ) I think it’s safe to say we are becoming one remarkable duo!

Update: both legs are officially off the couch, Wish is still sound asleep. Onto graduation tomorrow.


Day Five

There’s so much that can happen in 24 hours that I’m not sure where to begin with this post. Oh wait, yes I do. Let’s rewind to 3:30am because nothing good ever happens when you’re in a hotel in Georgia with your parents at that time. That is, unless you’re dealing with an anxious newborn.

Karma- a force with nature that I have quite the love/hate relationship with. Remember how I told you Wish pretty much slept through the night? Well, karma all but laughed in my face and decided to show me the true meaning of motherhood: sleepless nights. This she-gorilla of a dog didn’t sleep all night which meant mommy didn’t sleep all night which now means I’m basically sleep-writing. I don’t even think sleep-writing is actual word, but you’re going to have to forgive me here for I have not had enough coffee today to work effectively.

By dawn, I eventually caved, and grandma (my mom) and I brought her into bed where she wrapped her paws around my legs and finally went to sleep for an hour before our wake up call. I don’t care how pearly white her teeth are, I am totally not a fan of sedation by day and energy by night.

When we woke up this morning from our little nap, I went to bird feed my girl some bread. Yes, that’s right. No need to go back and reread what I just wrote, I did not dive into the deep end on account of lack of sleep, I just bird fed her as way to bond. Jennifer taught me this technique as it shows Wish that I’m her mother and offers a sense of security in this new environment. What did I learn from this experience you ask? I will apparently do literally anything for a dog I just met 48 hours ago, and I might be a little weird. Okay fine, I’m definitely weird.

But anyways, as you can see, we’ve been learning a lot during our time spent here. Classes usually range from 5-7 hours with outings in between, but as evident in this picture, Wish doesn’t seem to mind at all. Today, we had to request an extra chair because Wish kept stealing my mom’s seat. Are you thinking what I’m thinking too? She’s an absolute diva! She’s the only dog in class who gets up on a seat every morning to pay attention to lectures and demonstrations, so come to think of it, she’s just a total nerd like her momma. Keep making me proud, girl!

I’m beginning to see major improvements when we’re out in public which is so totally amazing and remarkable. Within one day, she went from slightly anxious and unsure to completely calm and “hey mom those boots will look amazing on you”. Seriously. We were taught how to ask these dogs to respond to “yes” and “no” questions by using our hands (left means yes, right means no), so when my father asked Wish whether or not I should purchase the boots, she eagerly directed her snout to “yes”! What a smarty pants.

Happy National Black Dog Day, little one! Can’t wait for the next 24 hours.