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Guest Blogger: From a Newly Diagnosed Mother

This month’s guest blogger comes from a mother whose son was diagnosed with SMA almost two years ago, Lynne Vaudry. Meet Evan!

I am honored to write as a guest blogger for Alyssa. As a mother of a young child with Spinal Muscular Atrophy, I have learned so much and been inspired by Alyssa’s posts. My son, Evan, was diagnosed with SMA type II at 2 years old after many months of doctor’s appointments and testing. Although it wasn’t easy news to hear about his diagnosis, my husband and I always tried to remain positive. I did know of a young lady in my own hometown who had Spinal Muscular Atrophy so, a few months after Evan’s diagnosis, I wrote to Alyssa Katherine Silva. I asked her if we could meet to talk, and she answered my request the same day I wrote with an enthusiastic, “Yes, I’d love to meet and chat!”
My husband, Steve, Evan and I met Alyssa and her mom, Dori, at a local coffee shop one March afternoon. Evan was wheeling around in his little manual wheelchair while the adults all chatted over coffee and donuts. We talked about how we shared the same doctors and how much is known about the disease today. Alyssa also reflected on her time in school and how important it was for her to play and socialize with friends. She told me about her wonderful experience of having a service dog and where the most accessible beaches were with beach wheel chairs and playgrounds for Evan. I went home that day with a new feeling of HOPE which was exactly what I needed at the time.

My husband and I still took Evan’s diagnosis one step at a time in order to fully understand all we could about SMA. We connected with the organization, Cure SMA, and read their information for newly diagnosed families. We learned about the appropriate physical therapy, equipment and home modifications necessary for a child using a wheelchair. We attended our first national conference for SMA in Washington DC, the same one attended by Alyssa and her family. We even joined the fundraiser committee for Working on Walking created by Alyssa.

Evan is now four years old and doing well. The shock of his diagnosis is gone as we’re focusing on doing the best we can for him as parents. Even though Evan uses a wheelchair, he wants to do the same things his peers do, just in a slightly different way. Evan swims, goes horseback riding, sledding, ice skating, and will try skiing next year. He’s not afraid to try anything!

During these past several years with Evan, I’m grateful that Alyssa started Working on Walking because it’s helping to raise money for SMA research, create awareness and provide hope to my son and others afflicted with this disease. Thank you, Alyssa.

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Winning the Myra Kraft Award

“Volunteers are not paid—not because they’re worthless, but because they’re priceless.”

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Joshua Kraft reiterated these words at the 2015 Myra Kraft Community MVP Awards presented by the Kraft family and the New England Patriots Charitable Foundation at Gillette Stadium. The room was filled with people who have made lasting impacts on the community with their outstanding volunteerism, and I just couldn’t believe I was among these remarkable people making remarkable differences with causes they all so passionately believe in.

About a month ago, I received a call from my very good friend saying that I was chosen as one of the recipients for this year’s award. I had known that she had nominated me, but truthfully, I was never expecting this phone call. So, as you might imagine, my reaction went something along the lines of, “wait. What? You’re kidding me. Stop it right now. Oh my God, you’re not kidding, are you?” It took about ten minutes and a three-way phone call with my mom on the other end to fully grasp what was going on. Although, I must admit about five of those minutes were spent trying to explain to my mom she was on a three-way call (sorry not sorry, mom). It was such a surreal moment to hear that, out of hundreds and hundreds of entries, this organization chose me. Not only would I be getting recognized for my volunteerism with Working On Walking, but I would also be receiving a donation to my nonprofit organization at an award luncheon with 25 other remarkable volunteers.

IMG_9984On the day of the luncheon, Robert Kraft welcomed us all with a beautiful speech about his late wife Myra and all her volunteering efforts throughout the years before she passed away from cancer. She was an incredible, selfless woman who did so much for her community, and I couldn’t have felt more grateful to have had the opportunity to represent her at this award. In being there and being surrounded by all these inspiring people, I realized it is moments like this that remind me to never lose sight of the dream I had at just ten years old.

When I was a little girl, my parents taught me how to fight through the challenges of life. They taught me how to be strong in spite of my weaknesses, and most importantly they taught me how to never give up. Through a little strength, determination, and the support of such remarkable people in my life, I have learned that anything is possible. I will forever remember this day and be eternally grateful to the Kraft family and New England Patriots Charitable Foundation who have recognized my efforts in volunteering and generously donated to Working On Walking. I am sincerely thankful to have shared this experience with such a reputable organization and for giving me further opportunity to bring awareness to my disease. It has been an incredible honor.

**Thank you to Kim, who nominated me for this award and always believed in me since the very beginning. She and her husband, Michael, are such important contributors to WOW, and I don’t know where I’d be without their support on this journey. Thank you to my friend, Stacey James, for giving us a once-in-a-lifetime tour of Gillette Stadium after the luncheon. It was the perfect ending to a perfect day. And, thank you to my extraordinary parents for teaching me the true meaning of strength and perseverance. I am nothing without your love, support, and guidance. 

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Guest Blogger: Fundraising for a Cure

This guest blog was written by a woman who is very near and dear to my heart. Her name is Mary Smith, and I’ve been fortunate enough to have her in my life for the last twenty years. She is the Vice President of my nonprofit organization, and she is also the reason why we have our annual fundraisers. I am so excited to introduce you to this incredible woman!

Alyssa has been such an important person in my life as well as my family’s for the last twenty years, and I was so honored when she asked me to be her guest blogger.  I don’t think I have words that can express the love and admiration I have in my heart for Alyssa. However, I do know that she has given me the determination to continue fundraising until the cure for Spinal Muscular Atrophy is finally made available to all children that are afflicted with this disease.

Six years ago, fundraising was something that I knew nothing about.  My husband and son had played in many golf tournament fundraisers, and I was always curious as to how much work it was. My husband would always say, “A LOT!”  (Boy was he right.) I had known for years that I wanted to do something to help Alyssa continue her fundraising efforts, but I wasn’t sure what to do. Finally, one June night as I was walking to the clubhouse at Louisquissett Golf Course with my husband, I told him I thought we should have a golf tournament for Alyssa, but I would need his help.  We spoke with the Pro and, before I knew it, we were on our way to our first event. Alyssa, her mom Dori, and her father Phil were of course on board too. I don’t think any of us knew what we were doing, so we crossed our fingers and prayed that everything would go well. The Pro was such a valuable resource and helped us with every detail for which I will always be grateful. I am also blessed with parents who were also willing to help in anyway that they could and still do. Most importantly, we will always be grateful for the original one hundred people who attended the golf, dinner and auction. In fact, many of them are still with us, but, boy, have we come a long way since then!

So, here we are in year six of the Working on Walking Golf Tournament and Dinner.  I never imagined that this one little idea was going to blossom into a yearly event.  Last year’s attendance was 450 extremely generous and wonderful people, and now, our goal for this year is 550 which we know will be reached. None of this growth and complete success of the event could be possible without the WOW committee. This group of volunteers has dedicated themselves to Alyssa, WOW and of course the cure of SMA. Words cannot express the appreciation I have for each and every one of them.

Although the event has continued to grow, one thing has not changed since the very first tournament. It’s that magical feeling that is shared throughout the room. The love, friendship and support that resonate among those in attendance is incredible.  After every event, many of us will meet people who attended and they will thank us for such an inspiring event. I hope that we never lose the “magic”. Although we are a fundraiser, I believe this event has turned into so much more. It is just a small chapter in a story of a young girl who grew into a determined woman who “Dares to be Remarkable” every day of her life and touches the heart of everyone she meets.  I am so grateful for the little girl who rolled her way into my life many years ago and has taught me the true meaning of courage, determination and strength.  She is my inspiration to continuing fundraising for Spinal Muscular Atrophy’s cure.

For more information on this event, please visit our website here!

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A Letter to My Brother on his Wedding Day

Happy wedding day to my big brother and my (almost) sister-in-law!

For my brother’s birthday this past February, I decided to write him a series of letters to open on different occasions that would be happening in his future. He opened the first letter on his birthday, and today (on his very special day) he opened the second one. Although we have decided to keep some letters private, Adam and I have chosen to share this one with you all.


Dear Adam,

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Okay. Breathe. This is it. Today is HUGE. It is monumental. It is something you’ve been waiting for ever since you spent time with that pretty brunette at the Patriots game. Today is the first day of the rest of your life.

I imagine you’re going to be reading this letter in the morning while we’re all getting ready. Mom will be tearing up, the guys will be suiting up, and I’ll be putting on my dress that I decided to put together at the last minute. I’ve always been notorious for doing things at the last second, but now that I think of it, so have you. Timing has never really been our thing. Whether it’s because of our procrastination tendencies or some other excuse, we have never mastered the art of punctuality. Maybe it’s genetic, so hey, good luck with your future children. Speaking of punctuality, as the best woman, I’m in charge of getting you to the church on time, so let’s not let your wife-to-be down, okay?

IMG_9340In just a couple of hours, your beautiful bride will be walking down the aisle to spend the rest of her life with you. I caught a glimpse of her dress a few months ago, and she is going to look absolutely stunning. I can’t wait for you to see her. Pretty soon, you both will exchange your vows, say your “I do’s”, and officially be married in the church of God. We’ll celebrate on the trolley (because limousines are definitely overrated), take pictures in the city, then head over to the reception for the greatest night ever. That’s where I’ll make my best woman speech. I’m a little nervous about it, but I hope you and Kryssy will like it. I apologize in advance if I start crying. Actually, that “if” should probably say “when” seeing as I’m tearing up just writing this. Since my speech will be about your beautiful love story with your lady, I’ve decided to write this letter to talk about me and you.

As my older brother, you’ve been a great role model to me, and, as your younger sister, I couldn’t have asked for a better sibling. We’ve always said how we share this unconventional bond between us, and I think that’s what has made our relationship so special. It’s hard to describe our relationship in just a few sentences, but I know you know exactly what I’m talking about when I say “unconventional”. Life hasn’t always been easy for us. My disease has brought upon a great deal of medical scares, and your accident that almost took your life led to an incredibly long recovery process. We’ve experienced some of life’s biggest challenges, but, truthfully, these challenges only strengthened the bond we share. Through the power of love and faith, we have learned just how beautiful and short life can be and to always be thankful to have each other. No matter how cruel this life may be sometimes, I thank God I have someone like you to guide and to love me each day.

Adam, it is both an honor and a pleasure to be your best woman today. You’ve been by my side for all the major milestones in my life, and I am so unbelievably excited you have asked me to be a part of yours. Thank you for being my best friend these last 24 years and for embracing our unconventionally remarkable relationship. I can’t wait to watch you start the next chapter of your life with the luckiest girl in the world. I wish you both the absolute best.

So, this is it. Are you ready? Let’s go get you married!

With love,

Your best woman

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Guest Blogger: From the Outside Looking In

It’s the last Sunday of the month which means it’s time to feature my next guest blogger! Below is a piece written by Krystina Pallos, the amazing girl who will be marrying my brother in just 34 days. In this post, Krystina explains what it was like to enter into a family as someone who was unfamiliar with a person living with a physical disability, let alone living with Spinal Muscular Atrophy. Her words have truly captured the essence of this family and the world in which we live in, but before you proceed, there’s something I must share with you all, first.

Krystina may think she’s the lucky one to be marrying into this family, but we are even luckier. You see, not everyone will care to understand what we go through on a daily basis. Not everyone will make the effort to help. Not everyone will be accepting of this disease and all the extra “stuff” that comes along with it. But, Krystina has. She has shown her love and support for this family and has always been accepting, understanding, and ever so willing to help. She’s the perfect girl for my brother. And, as for me, I cannot WAIT to officially call her a sister in just a few short weeks.

When Alyssa asked me to be her guest blogger for this month, I was honored and nervous at the same time. I have known Alyssa only three years where her past bloggers have known her pretty much her whole life. But, the more I thought about it, I realized I could give a very different perspective from others in Alyssa’s life. I could give the perspective of someone who came from the outside of the family.

I came into her life in 2012 without ever personally knowing anyone with a physical disability and had never even heard of SMA. I hate to admit that I was scared to interact with her at first, but I was unsure how to act. Should I offer to do things for her or just wait for her to ask me? Should I ask people to move their chair so she can get by or will she just ask herself? After some time of sitting on the outside and watching how her family and friends interacted with her, I got the answers to my questions.

IMG_5308For being someone who has to rely on others for nearly every task, I have never met someone more independent. She will let you know when she needs something, she will arrange all her own plans and she loves meeting new people. I often joke that for someone who can only sit still, Alyssa never actually sits still and hates just staying in the house and doing nothing. Even if it is just going for a car ride to get Awful Awfuls (our favorite milkshake here in Rhode Island which I will always gladly go with her for), she just wants to get out and be able to do the same activities as people who do not have a physical disability. SMA has taken away most of her physical capabilities, but she refuses to let it take away anything else.

As I often tell people when I talk about my future family, the Silva’s love so hard. They know no other way but to take one day at a time and work as a team. They are so close and open with each other as it seems the keys to making it all work are communication and lots of love. They have showed me that having a family member with a physical disability is an experience you should embrace with positivity. Some days are definitely tougher than others, especially those nights when there is not a nurse so everyone can just get a little sleep, but the good far outweighs the bad in the Silva house. There is always time for some laughter and love no matter how long the day was. They will not let SMA win this fight. Instead, they have always been in Alyssa’s corner helping her to be a true champion.

Three years ago, I started on the outside with no idea what SMA was or how to interact with someone living with it, as well as trying to figure out how to fit into this super close family. Marrying her brother, Adam, next month means I am officially on the inside! I have learned when I am needed without asking, what foods need a fork and which need a spoon when feeding her (I had a few spills when learning the correct techniques, sorry Alyssa!), how to perfectly bake cookies or brownies so they are soft enough for Alyssa to enjoy, and to move my feet when I am sitting in the back of the van… Or else she will run them right over. She has had such a positive influence on my life as well as my family’s lives, and I’m pretty sure she has taken over the title of my mom’s favorite child. Growing up, I always wished I had a sister, but now I understand why I was blessed with two brothers. It has made me so much more thankful for finally gaining a sister when Adam and I get married. And, not only am I gaining just any sister, I am lucking out and gaining the most remarkable one.

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Meet My Family: Part 1 of 3

 

 

This piece you are reading is going to be part of a series of posts. Be sure to follow along by submitting your email address in the sidebar! 


 

One question I am often asked in interviews or random conversations with people is, “How do you keep moving forward?” It’s certainly a valid question given my physical limitations and grim prognosis, but I often found myself searching to come up with an appropriate answer. After all, how am I supposed to sum up these last two decades in a few short sentences? There’s a lot that I’ve experienced and endured which has helped me in moving forward, of course. I’ve experienced happiness, I’ve experienced darkness, and I’ve experienced everything in between. However, through this ever-changing life, experiences come and go. They serve its purpose, but sometimes that purpose just isn’t enough. For me, my strength and positive attitude comes from three constants in my life that, I believe, have always kept me moving forward regardless of how difficult of a situation I might be faced with. I refer to them as the 3 F’s—my family, my friends, and my faith—and, this will forever and always be the answer to that question.

For the next few weeks, I am going to be discussing these important aspects (the 3 F’s) in my life. As for today, I’d like to start by introducing you to my family through a photo blog. Meet Phil (father), Dori (mother), Adam (brother), and Krystina (future sister-in-law). Oh, and we can’t forget about Vince Charming (the pup), too! The people you are looking at in these photos are the people who are completely and totally responsible for my well-being today. They are the people who have loved and supported me unconditionally. They are the people who selflessly put my needs before their own to ensure that I’m living to my highest potential. They are the people whom I can’t imagine my life without.

My family is the greatest gift in my life. Each and every day I’m thankful to be surrounded by amazing people that deeply care for me and have provided me with the support I need to lead a happy and fulfilling life. It is through their strength and guidance that I have not only succeeded, but also thrived in spite of living with this debilitating disease. Because of them, I am blessed.

 

(The pictures you are about to look at were taken by BJ Photography during the peak of the foliage season last autumn.)

 

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Guest Blogger: What a Lifelong Friendship Looks Like

Last month, I introduced you to my very best friend, Amanda, in a post titled “To the Girl Who Picked Up My Pencil“. Amanda is a pretty remarkable girl and the type of friend everyone needs in their life. I’m extremely fortunate to call her my best friend. After receiving so many heartwarming messages on that particular post and the relationship the two of us share, I asked Amanda if she’d like to be this month’s guest blogger. She happily accepted, and here’s what she had to say.

 

In one of her recent blog posts, Alyssa shared the story of how we became best friends back in kindergarten. I was truly flattered by all of her kind words, but cannot begin to tell you how lucky I feel that Alyssa came into my life and has never left my side. You often hear people say, “Everything happens for a reason.” Although it may sound cliché, I strongly believe in my heart that Alyssa did come into my life for a reason. She has made such an enormous impact on my life, and words cannot express how fortunate I feel to have her. People have often come up to me with questions about Alyssa and her disease, and I feel that people are curious about what it is like to have a best friend with a disability. Although Alyssa’s life is very different from most, in many ways, she and I are just like any other pair of 24-year-old best friends. For example:

  1. We spend our days talking about anything and everything.
  2. We convince each other that we really need to buy that new shirt (even if we own 25 others just like it).
  3. We have about 100 nicknames for each other, and can’t remember the last time we actually called the other by their first name.
  4. We like to go out on the weekends, but are sometimes even happier spending Friday nights in sweatpants watching reruns of ‘The Office’.
  5. We know exactly how to cheer each other up when we are feeling sad (for Alyssa, anything in the dessert category should do it).
  6. We tease each other, but all out of love, of course.
  7. We spend a ridiculous amount of time together, and will often send “I miss you texts” when we haven’t seen each other in a while (so, basically two days).

The list could go on and on. Alyssa’s life may be different, but despite the pain and fatigue she often faces as a result of her disease, Alyssa never lets that hold her back, especially when it comes to being a friend. I went to college at Sacred Heart University in Fairfield, CT, and, of course, I always missed Alyssa when I was away at school. For five years, we were two and a half hours and a hundred miles away from each other. One day during my senior year, Alyssa told me her New Year’s resolution was to take a trip to Connecticut to visit me at school, and, just a couple weeks later, I was woken up to find Alyssa sitting in my living room ready with a camera to capture my surprise! Despite how difficult and tiring it must have been, Alyssa drove two and a half hours each way just to spend the day with me and to see my school for the first time. This will always be one of my favorite memories, and I am so happy I had the chance to share my school with her. 

As we are approaching our 20th year of being best friends, I feel as though I can’t pick just one “Alyssa story” to tell. In fact, I could probably write an entire book on how much she has inspired me, and changed my life. Having a best friend with a disability teaches you a lot of things. Alyssa has taught me the true meaning of strength, perseverance, and hope. She overcomes great obstacles, and never loses the desire to live life to the fullest. When I am having a rough day and feeling unmotivated, I often think of Alyssa and all she overcomes which helps motivate me to be better. I am so unbelievably proud of her and all she has accomplished and cannot wait to see what amazing and inspiring things she does in the future. There is truly nothing on earth like a lifelong best friend.

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