The Bellina’s Journey with ALS
Matt and Caitlin Bellina are a crazy couple leading an even crazier life.
Welcome to Tweed Thoughts
We are so happy you are here! Some of you are friends, some of you are family and probably some of you are just beginning your own journey with ALS.
We started this website/blog because Matt gets so many emails and requests for information from patients daily. We also have friends and family of ours and other patients who ask how to help their loved ones with this disease. We are by no means experts – well, Matt is – but we have been on this road for a couple years now. Hopefully some of our experiences and opinions can help others in their lives.
One wild man, one stubborn woman, three crazy boys and one terminal diagnosis!
We met in 2002. That’s where it all started. An unruly, impossibly cute cadet on dorm restriction and a hungry, french-fry loving college freshman. Not quite love at first sight. Fast forward through 5 years of college life and entering the “real world” of Naval aviation. We married in the fall of 2007. Matt was in training to be a Naval Aviator in Meridian, MS. He earned his Wings of Gold in the spring of 2008. From Meridian, he selected Prowlers (EA-6B) and we moved from the Dirty South to a tiny island north of Seattle in the Puget Sound. Everything started going a little sideways.
Matt was flying when he noticed his throttle hand cramping and he was having vertigo issues, especially when he was in the clouds. He was grounded. He volunteered for an IA (individual augmentation) to Djibouti for 9 months while waiting for the symptoms to clear. The symptoms never cleared.
From Whidbey Island we – the 4 of us – moved to Minneapolis, MN so Matt could fill an administrative billet at the MEPS (Military Entrance Processing Station). We had recently gotten a dog and found out we were expecting our first child. Matt’s symptoms continued to plague him but he seemed healthy otherwise. It was while we were in Minneapolis we first heard those awful three letters – ALS. By that time we had a 6 month old and were starting to think about going for #2. This DID NOT fit into our life plan. We were not OK with Matt only being around another 2-5 years!
Once the Navy realized active duty was not a viable option for Matt anymore we got to “choose” where he would transition back into civilian life. We chose Philadelphia. While in Philly, in the University of Pennsylvania Neurology department, on April 8, 2014, Matt got his official diagnosis of ALS. He was by himself as there were now 2 little guys and Caitlin coming to the inevitable was more hassle than either wanted to go through. Matt realized he was near one of his recruiting stations so he left his doctors office and went back to work.
Matt was honorably discharged from the United States Navy in 2015. He served for 10 years as a Naval Officer and held a diverse range of appointments. We are extremely fortunate that ALS is labeled a “service related disease”. Therefore, the Department of Veteran’s Affairs covers the majority of the cost this disease brings on our family.
Since diagnosis, we have gotten into advocacy work for the terminally ill population. Most notably, Matt was instrumental in the passage of The Right to Try Act in 2018. It is a step in the right direction towards patient bodily autonomy but there is still a ways to go to bring about the change we wish to see in how terminally ill patients in America are treated and the choices they are given for their care.
Our lives are dedicated to God, each other, our boys and the community. Please feel free to reach out to either of us with questions, for encouragement or if you need someone to vent to about your situation. We really feel we were led down this road for a purpose and that purpose is realized in our work within this beautiful community.