Hey I’m Matt!
I was born February of 1990. I had a pretty normal birth, but my health rapidly declined after that day. I slowly began to starve to death, was always in pain and my skin was always really salty. After weeks of doctors being baffled, a lead researcher on the team that genotyped a disease called Cystic Fibrosis spotted me out of the crowed, was curious, and requested some tests done. Pff, wow, talk about one in a million chances of that happening. Soon, I was officially diagnosed with Cystic Fibrosis at 7 weeks old. My life was saved. Later at age 11, I developed CFRD (Cystic Fibrosis Related Diabetes).
So CF is a pretty big beast of a disease. It affects every part of the body but specifically the lungs and the digestive system. My lungs are filled with a thick fluid that stops me from breathing well. That means not enough oxygen to my body, which means chronic fatigue, loss of breath and cardio, weight fluctuations, loss of strength, racing heart, trouble thinking, etc but the biggest danger is the chest infections..they'll knock a dude out. So there are lots of treatments I do to try and remove that thick fluid. CF means I also can’t digest my food. So I take around 60 pills/day to eat. It’s a lot of work to fight to keep healthy. On top of that the diabetes care is not in agreement with how to care for a CF body. So the two diseases fight against each other. Most people with CF don't live past 30.
But my story isn’t about how CF works, its about overcoming your circumstance and living free. Thriving in the midst of struggle, and having a full life. It’s about becoming the best version of yourself.
So right from the get-go, because the disease is so serious, I grew up being told by authorities and medical professionals a lot of doomsday declarations about my life. Nothing but negativity. Things like “You probably won’t live past a certain age, you’ll never be able to be strong, you’ll always be skinny, your weight is never good enough, you’ll never have kids, we expect your lungs to get worse, things are looking bad, we don’t expect you to recover from here on in, it’s really dangerous to travel, the infection has scared your lungs, there is no going back now”. I would do lung function tests that showed my lungs were declining, and I was always met with comments like I “I’m disappointed, you need to work harder to get it up” as if I was neglecting any effort to stay healthy when in fact the opposite was true. I grew up in a fear based system that was focused on what was going wrong instead of what was good and the possibilities of a brighter future. This dramatically affected my will to live and my identity--instead of Matt, a person, I was "sick boy".
From a young age, the opportunity to despair and become a victim presented itself often.
When I entered school I was highly dyslexic. I struggled greatly in the public school system. Reading, writing, numbers, was extremely difficult. My teacher would often get mad at me for not understanding and humiliate me in front of the class. I remember her asking me multiple times if I was stupid. At one point she decided I was mentally incompetent, removed me from the class, and put me in a special needs class room.
Again, the opportunity to despair presented itself. My self confidence and sense of self worth were being attacked, and honestly, my defenses quickly began to crumble.
BUT, a HERO was in my life and saved me... Yep. Mamma.
My Dad is an absolute legend and so key in my story too, but for now I’m going to share about her.
She pulled me out of school and became my teacher. My own Mamma woman version of Mr. Miyagi! She showed me my inherent value, and taught me how to recognize it. She taught me to separate the illness from who I was. My identity. I was not the sick boy. I was Matt, talented and smart, who just happened to have a disease, and that was it.
She showed me I was not limited or defined by my circumstance.
She taught me a different way to learn and I soon became skilled in reading and writing. Later in life many of my university papers even became top in my classes.
I learned the value of perseverance, hope, purpose, destiny, and most of all I was given permission to chase after what I love. To believe it was possible, to believe in myself, to try new things, and that it was ok to fail, and at times even flail. Never say never is a lie. I was taught to NEVER WORRY.
Because of her teaching my physical health actually improved and even today my health and ability to thrive defies the data.
Today at 26, because of my parents, I’m an accomplished fiddle player/musician, an artist, a builder, a teacher, an outdoor adventure guide, a commercial fisherman, a world traveler and more. It's not because I'm some exceptionally amazing person, it's because Heros were in my life and taught me my value.
Though there is still struggle in the process, I was given the tools to LIVE LIFE FULLY. To reach my potential. To enjoy life. From zero to hero.
I WANT THAT FOR YOU.
I dream to see you become the best version of yourself, and in turn, be a hero for others.
That’s why we donate a portion of our profits to CF research and organizations that save lives.
The club is my way of spreading awareness about CF, and helping people be amazing and change the world.
Oh ps, we also sell tee shirts in your favorite colors…as long as your favorite color is white or black…
Every shirt you buy helps find a cure for CF and saves lives
Thank you for being you and helping us change the world!