Thank you for helping me reach towards my goal as we walk together to defeat ALS! 

Everyone knows I have a very strong connection to ALS due to losing my Uncle Tom to the disease in September of 2022. My Uncle Tom was, is, and will always be a huge part of my life even though he is no longer physically with us. Growing up, my uncle Tom lived across the street from me with my grandma. Being only a door step away, I was able to grow up with him around all of the time which was such a blessing to be able to have such a close relationship. This also meant that I have been around ALS my entire life, which means I have a very deep understanding of what this disease does not only to the person who is diagnosed with it, but to an entire family. 

Usually ALS is pretty fast moving and will take someone away from their family, their life, and their friends in 2-5 years, but my Uncle Tom's condition was slow moving, which was a curse and a blessing. He started experiencing symptoms at the young age of 23, so by the time I entered the world, he was already in a wheelchair, struggling with his speech and didn’t have much function if his hands. When I used to go over when I was young, we would sit in the living room and watch tv together, and every once in awhile I would hear “click click”, which was a sound Tom would make with his mouth to get someones attention. I’d look over and he would be using all of his might to kick his legs (what a show off!!). I think it was his way of trying to comfort me and tell me that he was doing everything he could to make sure he was around for a long time. And he was! I had just turned 27 when my uncle passed away only a few short days before my 28th birthday. Sitting here now at almost 32 years old, my heart still aches for just another day with him. It makes me angry to think of all the memories my family and I were robbed of because of ALS. My wedding day, my sister Alisons wedding day, him being around to watch my big sister Sara have my incredible niece Melody Jean, the first baby of the family. He would have adored Melly and I know she would have adored him too. 

As the years passed I watched my uncle lose more and more of his functions and as I became an adult, my sisters and I became more involved in Tom’s care. This really allowed us to understand what it took to keep him comfortable, safe, healthy, and most importantly, happy. My grandma, my mother, and my uncle gave so much of their lives to take care of Uncle Tom, they are true heroes in my book. Because of their hard work, love and dedication to him, I was able to have him around for longer than this disease typically allows. 

We shared a love for music and every year for birthdays and holidays he would burn me cds of music he thought I would like. The Beatles, Maroon 5, Lynyrd Skynyrd, and even the occasional wild card like Gwen Stefani’s “B-A-N-A-N-A-S”! I have so many of those cds and I am so lucky I will always have those. He also was such a talented artist, every holiday I would get a new beautiful card with his artwork in it, personalized to say my name or give a holiday greeting. ALS United CT has actually used his paintings many times for their Christmas cards which is such an honor! I have the last birthday card he made me 10 days before he passed. How lucky am I that I have so much to remember him by, but man do I wish he was still here with us. 

That’s where the ALS United comes in. Thanks to them and many friends our family has made through the years in the ALS/home care community, Uncle Tom was gifted things that helped his quality of life. From medical equipment to emotional support, this amazing community has done everything they could to help. The one thing I am the most grateful for was his eye gaze machine! This machine is the biggest blessing we ever received in my opinion. It's an attachment that hooks up to a computer or a wheelchair that allowed my uncle Tom to use the internet and basically any function on a computer. Through this he was able to continue making art…WITH HIS EYES, LITERALLY! Instead of using a mouse like someone would who could move their hands, Tom would use his eyes as the mouse to access the computer. The art he created using only the movement of his eyes is 100x better than anything I’ve ever created with my two working hands. On top of the blessing of being able to continue using his creativity, access to the computer allowed him to have a social life. He was able to create a Facebook and reconnect with old friends, make new friends, and communicate like any other person. Also, the eye gaze has a function that allowed Tom to type with his eyes, (or using the very minimal function he had left of his thumb and an invention my uncle Andy created with a tennis ball, some tape, and a clicker) he was able to type things and hit play which would read what he wrote out loud, we affectionately named the computerized voice “Jeffery”. These technological advances allowed me to have a true and meaningful relationship to my Uncle. We could talk even though he no longer had a physical voice. We could email, Facebook message, chat in person, he would tell us if he needed his leg moved or if he wasn’t feeling well. This was HUGE for his quality of life and I truly don’t know if he would have made it as long as he did without it.

This is just the tip of the iceberg on why I am walking and why I’m asking you to donate to ALS United. We need the donations that way other families can keep their “Uncle Toms” around for just a little longer. Donations help not only try and find a cure for this horrible desires, but they also help so people who have ALS can access the tools and get the help they desperately need to not only survive, but thrive to the best of their abilities through this grueling, merciless battle. And not only that, but to take steps toward finding a CURE. 

This walk raises funds to support those affected by ALS and to spread awareness of the urgency to find treatments and a cure. so please, if you have even $1 to donate, it could help change the lives of people affected by ALS the way it helped my family. 

I will forever be grateful for the ALS community and it’s time to give them the support that they showed my family all of these years!

This one is for you, Tomas!

I love you and I miss you more and more with everyday that passes!