The month of March is when you’ll start to notice the green MDA shamrocks floating around local stores like Kroger, Lowes, Walgreens, & this year AT BL, putting the green in St. Patrick's day and MDA Fundraising!
In honor of this big fundraising month, I’ll be teaching a donation slow flow vinyasa class MOVE FOR MDA THIS SUNDAY, March 4th at 3:00pm. MDA is very near and dear to my heart because my older brother Matt was born with a rare form of muscular dystrophy and our family was always supported and cared for by the MDA community.
When Matt was born, he seemed like a perfectly healthy baby boy. My parents took their first child home believing their only challenges would be that of new parents. My mom first realized something wasn’t right when Matt couldn’t sit up when babies typically should. From that moment on its would take several months, tests and questions to try and figure out what was wrong with Matt. On his first birthday he was diagnosed with Congenital Fibre Type Disproportion. Doctors told my parents that Matt’s next year would be a struggle for survival, and if he made it past the age of two his life would be a constant battle as he would never walk on his own. At this time Matt was very sick and wasn’t able to keep any food down, he became very malnourished, weighing only 11 pounds at 12 months old. This led to one of his first surgeries, a surgery that made it so he could never throw up, but subsequently he wouldn’t be able to eat or drink either and would need a feeding tube for the rest of his life. Matt started to gain weight and over time my mom began to realize that he was able to swallow small amounts of water. It turned out that Matt's surgery was some sort of miracle where food was able to go down, but it would never come up. He has been able to eat normally ever since.
Matt continued to fight and he had several more surgeries. At the age of seven he had a procedure done on the back of his legs to release his hamstrings. This was a delicate surgery that could have made him better or worse. This surgery went well for him and by the age of eight, he began to walk! Matt is one of the few people we know of who has gone from a wheelchair to walking and continued his ability to walk. Matt doesn’t just walk. He runs, skateboards, participates in basketball, softball, bowling, and track and field for Special Olympics and he even attends better backs yoga classes at Body Language from time to time.
Growing up with my brother had a huge impact on my life. From a young age Matt unknowingly taught me some of the most important lessons of my life, I truly believe that because of him I became the person that I am today. It wasn’t easy to grow up being the little sister who could walk and run while my brother was confined to a wheelchair. Everything for me came easily while everything for him was a giant obstacle. I hated that. It wasn’t fair. But amazingly, Matt rarely complained and he fought harder than anybody I knew to learn things that we take for granted every single day. My whole life I have looked up to my brother. He always has and always will be my biggest hero.
Because of my brother I began volunteering at MDA Camp. Matt attended MDA Camp for 16 years throughout his whole childhood and I have volunteered the last 9 years. MDA Camp is truly the most amazing place in the world. An organization that works year round to plan a week where every child with MD can do activities that would not normally be accessible for them at other camps. A community of volunteers who come together from all over the state to make a difference in the lives of these children and THE KIDS who get to spend the best week of the year partaking in activities with friends who won’t look at them differently because they are all the same, making memories, laughing, smiling, just being kids.
These campers have left so many footprints on my heart. I owe it to them and my brother to bring awareness to the wonderful things MDA does for the individuals and families with MD.
Let’s come together & MOVE for MDA, sending more kids to MDA Camp this summer!
