Something about Summer

With the days falling shorter and the leaves changing color, I can feel the last bit of summer sunshine slowly fading into autumn. It seems like yesterday I was packing my bags for Washington DC to kick off my summer, and now here I am, replaying these last few months over and over in my mind, wishing I could relive each moment and savor them for just a little while longer. There’s always going to be that one summer that’s stamped our lives in some way, the kind of summer that changes us for the better. This summer has done just that for me.

The summer began with the launch of my Dare to be Remarkable documentary project. What I thought was just the beginning of my next endeavor in generating SMA awareness turned out to be something greater. It was the beginning of the most remarkable journey I have ever embarked on to date. In June, I traveled to Washington, D.C. to advocate for SMA and along the way met some incredible people who have been affected by this disease. These people and their heartbreakingly touching stories taught me the true meaning of fearlessness and ignited a spark in my bones to continue to grow and thrive. I came home from that trip with a newfound perspective of life and the gusto to want to support and help SMA families across the globe. I felt it more than ever.

Summer of 2014 was filled with great friends, old and new, beach trips, and so much more. With the help of an amazing committee and 450 incredible guests, I donated $28,000 to Cure SMA from our 5th annual fundraiser. This led me to officially surpass my goal of wanting to raise $100,000 for SMA. I toured the Alex and Ani headquarters here in Rhode Island and was given the opportunity to be a guest blogger for them during SMA awareness month. Alex and Ani is primarily focused on spreading love and positive energy through their products, and actually seeing that firsthand really inspired me to try and live by the same beliefs.

To top off a perfect summer, I spent a Friday night with the New England Patriots during a preseason game at Gillette Stadium. I cannot begin to express the kindness and warmth that radiates from the entire Patriots organization, and I will forever be indebted to Stacey James, Robert Kraft, and all the other members of the organization for giving me and my family the opportunity of a lifetime. I never imagined, after all these years of sitting on my couch watching from in front of a TV screen, that one day I’d be on the sidelines spending time with Robert Kraft, Andre Tippett, and even Vince Wilfork (my new puppy’s namesake). That night was more than I deserved, and I learned that the Patriots are just as remarkable off the field as they are on the field.

As most things in life usually go, with great joy comes great sorrow. Losing my service dog, Fred, at the very end of summer was (and still is) one of the most difficult experiences I have ever faced. Moving forward without him by my side has been heart wrenching, to say the least, but, with every ending we try and look forward to new beginnings. The goodness exemplified by the people I met this summer encourages and drives me to continue to work towards being the best version of myself as I can possibly be. There are still so many opportunities and plans on my horizon, and I cannot wait to share my journey with each and every one of you. Here’s to a new season and embracing the changes with every leaf that turns to gold.

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Losing Man’s Best Friend: A Tribute to my dog, Fred

IMG_5397Today, I woke up with heaviness in my heart and a piercing headache from crying myself to sleep. This was the day I’ve been dreading the last couple of months, the day I would lose a part of me forever. I was prepared. I knew the reality of the situation, but I guess you could say I wasn’t ready to accept it. The selfish side of me would probably say I would never be ready to accept it. He was my best friend, the one being that gave me unconditional love at every hour of the day, expecting nothing in return, but, he was suffering too much to keep him going any longer. Today, I lost my beloved service dog, Fred.

Fred was one of the greatest gifts a girl could ever ask for, and I feel forever indebted to Canine Assistants and all of Fred’s trainers in Georgia. They have given me the best years of my life by giving me my Freddy. I can remember going to the Canine Assistants training camp thinking I was going to get this really cool dog that can turn on lights, and open doors, and even make the bed. What I came home with was so much more. Anyone who was lucky enough to have met Fred knows just how extraordinary he was. Sure, he’d have his moments where he’d bury the TV remote in the snow, or eat your roast beef sandwich as soon as you turned your back, or even chew on a twenty dollar bill. But, there was something special about Fred. We shared this love, this unexplainable love for each other that probably doesn’t even exist in many human-to-human interactions. Fred was my everything, and I was his everything, and, together, we formed an inseparable bond.

IMG_5449But, just like how all great and wonderful things end, the day had to come where Fred had to cross the rainbow bridge. It was heart-wrenching to see my boy deteriorate the way he did because, like most dog owners can probably attest to, he didn’t deserve to suffer. He didn’t deserve to go deaf, he didn’t deserve to get cloudy eyes, and he most definitely didn’t deserve to nearly lose his ability to walk. Despite his struggle in his last few weeks of life, he continued to show his loyalty to me which broke my heart even more. No matter the pain Fred was feeling, he always put my life first until the very end. As I cried my way into my room after giving Fred one more kiss this morning, he still managed to stumble across the house to give me one last goodbye.

The house seems quieter, and there’s a feeling of emptiness inside of me as I lay on the couch knowing he’s no longer with us. I already miss that sandpaper-like tongue of his, the way he’d lick my face as if he couldn’t love me more. That was the last moment we shared together. I miss the sound of his paws clicking on the floor and how he would follow me around the house, always making sure I was being taken care of. I miss his selflessness and unconditional love. I miss him so much. Tonight, I’ll go to bed wishing he was still sleeping next to me on the floor, but I’ll find comfort in knowing he’s no longer in pain. It seems impossible to imagine a world without Fred, but the memory of him will never fade. He has had my heart for 12 years, and he’ll have it for an infinity more. I love you always and forever, my Freddy boy.

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To read my original post about Fred, click here.

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Remarkable People, Remarkable Night — A Photo Blog

If I could relive this night over and over again I would. Thank you for daring to be remarkable and helping to make a difference in the SMA community. Here are a few of my favorite pictures from the 5th Annual Working On Walking Fundraiser.

 

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Louisquisset Golf Course in North Providence, RI

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Don’t drop her!!

IMG_0025My future sister-in-law dominating out on the course.

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Greeting the golfers as they roll by!

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We have SMA, SMA doesn’t have us.

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Do you think we’re pretty?

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Before 450 remarkable guests arrived.

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Evan, who has SMA type II, and his parents.

SONY DSC  So many people supporting SMA!

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The honorable Congressman Langevin and I.

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After meeting in Washington DC, Congressman Cicilline has been a huge supporter of SMA.

IMG_0077Nineteen years of best friendship and counting.

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So great having one of my best friends by my side.

IMG_0073So much love for this incredible woman.

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My brother has always been quite the ladies’ man…

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My good friend, Stacey James, and I. Honored to have him as my guest.

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VP and P of Working On Walking! Stay tuned.

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The 5th Annual Working On Walking Fundraiser

It is currently way past midnight, and after a fifteen-hour day of nonstop action, I should probably be well into my REM cycle right now. However, before I head to bed, there’s something I must share with you first. Today was one of those days that I’ll never ever forget, and it is all because of the incredible kindness that came from so many incredible people. Today, 450 people gathered to join the fight in finding a cure for Spinal Muscular Atrophy at our 5th annual Working On Walking fundraiser, and I had never been more overwhelmed with gratitude. As I looked around the room, I reflected on the previous years’ events and how far my committee and I have come in just four years. To think that we started this fundraiser with just a little over one hundred guests, and then there we were tonight, sharing a beautiful evening with several hundred friends and family. It doesn’t get any better than that. Thank you for your generosity, and thank you for joining me in my quest to find a cure. But, most importantly, thank you for making an extraordinary difference in the lives of so many people afflicted with this disease. Today was truly remarkable. Goodnight.

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A Trip to Remember–Here’s to my readers

As human beings, I believe that we experience pivotal moments in our lives that help us to define who we are and what our purpose is here on earth. These experiences usually occur when we’re least expecting it, and oftentimes we don’t value its true impact until after the fact. Two weeks ago, I traveled to Maryland/Washington, D.C. because I wanted to be a part of the annual Spinal Muscular Atrophy conference put on by Families of SMA. I wanted to meet families in situations like mine and explore the nation’s capital and all of its history for the very first time, but what I took home with me from that trip was infinitely so much more. To everyone I met down in Maryland, every person who has been affected by SMA, every follower on this blog, and every person that stumbles upon this post, this is for you.

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My time spent in D.C. was truly remarkable. My parents and I explored some museums, went to a few landmarks, and even toured the White House. Being in the White House was quite an unforgettable event, and although there were no sightings of the Obamas, I did spot the First Dog’s chew toy in one of their kitchens—that’s pretty noteworthy, right? Aside from being your typical D.C. tourist, my parents and I took part in SMA Day on Capitol Hill, a day where dozens of people (all who have been affected by SMA in some way) gathered at the U.S. Capitol to advocate for certain SMA issues. We were all assigned to meet with our local senators and congressmen, and I was unbelievably impressed by how receptive these politicians were. It was the uttermost honor to have had the opportunity to advocate for SMA with my senators and congressmen, and I am so grateful to have been included in such an important day for the SMA community.

IMG_0119During my time spent on Capitol Hill and at the resort where the conference was held, I also had the privilege of meeting so many families who all understood one another, and that’s something I’ve never really experienced back home. At times, it’s easy to feel isolated and lost when those around you don’t fully comprehend what a day in the life of SMA entails. I’m by no means suggesting we lead these intricately complicated lives, but we ARE different than your average person, and many times people don’t completely understand the challenges we face on a daily basis. Being surrounded by strangers who immediately know exactly what you’re going through and can relate on a personal level is actually a really great and comforting feeling. That was how I felt when interacting with everyone. Connecting with them just seemed so effortless; it was almost as if they’ve known me my entire life.

Upon meeting the conference attendees, there were several occasions where I was greeted by a, “Hi, are you Alyssa Silva? I read your blog!” Yes, IMG_0176it was a little startling at first because I never imagined myself being “noticed” hundreds of miles away from home. However, after listening to these people’s stories about their diagnoses and how inspired they were after reading my blog, I was left feeling deeply humbled by their words. Ever since I was a little girl, I’ve been so passionate about raising funds and awareness for SMA; and speaking with these families fueled an ever greater passion inside of me to instill courage, happiness, and most importantly, hope, into their lives. Being told firsthand that my words and my accomplishments have provided hope to a family whose son or daughter has been given a year to live, really put a lot into perspective. I guess you could say I’ve never fully realized just how widespread my blog has been over the past year and a half, and reflecting on my encounters with these families, I now understand that I have a voice that needs to be heard. And, I promise it will be loud.

After five incredible days, I left Maryland with a few souvenirs, a couple of suitcases, and a new understanding of my place in this world. You see, I’m the girl that was given two years to live, but now I’m the girl who has graduated college and is continuing to strive towards success. I’m the girl that has been beaten down by this disease countless times, but I’ve never been the girl who has been defeated. From tragedies to triumphs to everything in between, I’m willing to share my story if it means I’m helping someone. I never expected to receive any kind of feedback on my blog, but after hearing so many heartfelt messages from the people at the conference, I realize just how important it is for me to keep sharing my story. This is my purpose. I’m here to help, and I can only hope that someday I will make a difference in this world.

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I’d like to thank my mother and father for working so hard to give me an amazing trip. Unexpectedly perfect it was, and wonderfully memorable it will always be. Love you!

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Alyssa-The Truly Remarkable Woman

Originally posted on :

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My dear friend Alyssa Silva is an absolutely “remarkable” woman. Battling with SMA (spinal muscular atrophy) since she was small, Alyssa has not only come over various obstacles and faces daily challenges, but she is possibly the funniest, most caring, and inspirational individual I know who has beat the odds beyond belief. She is currently daring to be remarkable, which I think she already has done a thousand times over, and wants to create a stellar documentary about what it is like to live with SMA to raise awareness. Did you know SMA is projected to have a cure within the next few years? The very next disease.

Watch her documentary below and help fund Alyssa’s dream to produce a documentary which will provide hope and inspiration to people in situations in where those things were once lost.

And to Alyssa-thank you for being you.  You have never ceased to…

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Dare to be Remarkable–A SMA Documentary

https://www.kickstarter.com/projects/1401415743/dare-to-be-remarkable-living-with-sma

 

I’ve always been extremely passionate about raising money and awareness for Spinal Muscular Atrophy, as well as doing whatever it takes to make a difference in this world. When I was ten years old, I dreamed of raising a simple $100 for my disease. I decided to pursue my love for art and designed greeting cards and calendars to sell where all proceeds went towards finding a cure. Almost ten years and thousands of dollars later, I embarked on my next journey: the annual fundraiser for Spinal Muscular Atrophy. And, as we are nearing our fifth annual event, I’m still in complete awe of how wonderfully supportive the community has been throughout the years. Then, finally, last year I had this crazy idea to begin a blog that depicted “a day in the life” of someone who has SMA. That so-called “crazy” idea happened to be the best decision of my life, as I’ve touched, and been touched by, so many people across the globe. Now, with new ideas and inspirations floating around in my brain, I’m hoping to take on one more project: a documentary about living with SMA.

Several months ago, I teamed up with a local video production company, Animus Studios, in hopes of producing a documentary on my life about what it is like living with a debilitating illness like SMA and how it affects our families and those around us. With this documentary, we want to create an avenue that will not only provide inspiration to our audience, but also remind them they are capable of accomplishing just about anything they set their minds to. Living with a disease certainly has its obstacles and challenges, but we must learn to rise above our limitations and give this life all we have. Ultimately, we want people to know that, no matter what their situation may be, they can “dare to be remarkable”.

However, before we go forth with this project, we first have to raise sufficient funds to cover all of our expenses during the filming process. In doing so, we have decided to go through a crowdfunding site called Kickstarter in order to help us reach our goal of $15,000. We have just 30 days to meet our goal while campaigning on an all-or-nothing approach. Either we reach or surpass our original goal of $15,000 or the money is returned to each “backer” and we’re left with nothing. With that said, I am asking everyone from the bottom of my heart to share this project. Sure, $15,000 is a good chunk of money, but if everyone shares the link with anyone and everyone, reaching our goal might not be a longshot after all. So, please, share the link on social media, email your contact lists, blog about it, text your friends, or simply spread the campaign through word of mouth.

When all is said and done, I want people to watch my documentary and understand that disabilities won’t hold someone back from chasing their dreams. I want to provide encouragement to families with newly diagnosed children with SMA and show them that despite their feelings of fear and despair, their children still have a bright future ahead. In other words, I want people to be reminded that even in the darkest of situations, a light can be found. But, most importantly, I want to provide hope where hope was once lost.

I hope you will consider donating to this campaign and sharing it with everyone you know. To stay updated with our progress, be sure to “like” our Facebook page, Dare to be Remarkable. Together, I know we can make a difference.

 

View the Kickstarter campaign and 5-minute video trailer here.

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