A little background story on Muscular Dystrophy
23 years ago, I was diagnosed with Muscular Dystrophy. September 23rd, 1993 was the day we found out and I was only 2 years old. My golden anniversary! It has been a crazy, eventful 23 years. Since I was little, the quote "I can and I will" has been my quote I live off of. If you used to watch the local MDA Telethon, you would see my family and I on there and I always wore my "I can and I will" pin. I really never understood the quote until I grew older and realized I had tried to apply that to everything I do. Years later, I still tell myself that all the time. It was only fitting that I wore this shirt today and share my story in a nutshell.
My Journey with Muscular Dystrophy
I grew up walking until the age of 12 when I slipped and fell and broke my right hip. After a surgery of inputting two screws into my hip, I was in a full body cast for almost 3 months; leaving me to be homeschooled for half of my 4th grade year. Being in the cast for so long made my muscles extremely weak. The doctor told us he had never seen anyone with MD walk again without the aid of braces/crutches etc. Well, that didn't mean anything to my family and I. We moved up physical therapy from one day a week to three. I was pretty much a regular at this place where the entire staff knew me and my whole family by name. At that point, I was using leg braces to walk but my therapist was confident I would one day not need them. I wore the braces all day, everyday at my elementary school and would walk the entire school to build up my stamina and muscles. I wore them so much that the metal on one of my braces snapped in half (Forest Gump style) and I ended up breaking my ankle in two spots at school.
I continued PT, however. By the time I got to therapy I could take off my braces, my legs would be dripping sweat. I can still remember the feeling of taking them off lol it was like taking off a tight pair of pants after eating a Thanksgiving meal😂 I would leave there crying and sweating but I had the support of my family to help me keep going.
Months later, my dad had taken me to therapy and my therapist was showing him how I was doing. I was able to walk brace free without anyone's help. My therapist yelled "she's doing it!" The whole staff was smiling ear to ear. it was such a great feeling, especially knowing my doctor had said he has never seen anyone fully recover. Unfortunately, as I got older and busier, my therapy sessions slowed down and I was in high school at that point. My school was too big to walk everyday so that's when I started using the chair. I still could walk with braces though and I was fine with that.
After high school, I made the decision to go away to college. Two hours away from my home. Everyone was concerned and hopeful that i would make it on my own. I never had a doubt even before I started my first year. If anything, I was so excited to be on my own. During my last two years of school, I lived off campus so I knew eventually I would need my own car.
After a LONG two years of driving lessons, I got my license and was surprised with a car from my parents. From going to relying on other people to take you anywhere to being able to jump in the car and go wherever I wanted, whenever I wanted was one of the best feelings. My greatest motivation when I do something is when someone gives me those puppy eyes aka (in other blunt words) their pity. If you know me well, you know I can't stand when anyone feels sorry for me! There's not one thing to feel sorry about. I wake up everyday surrounded by the best family and good friends and I'm completely healthy. Living with it has definitely made me appreciate the little things in life. As most of you know, MD is known to progressively weaken your muscles over time. However, I can honestly say I have not noticed anything in my body getting weaker. I'm not on any medication which is a huge plus for someone in my shoes. But unfortunately, it's not like that for everyone with Muscular Dystrophy so that's why it's important we find a cure. I feel like I could honestly write a book with all of my crazy experiences and the people I've met along the way.
Thankfully, this past January, I had the opportunity to receive stem cell therapy in Mexico. I am back home now after a quick trip and now we just have to wait for 3-6 months to see if it works. We are hoping it makes my muscles stronger and slows down the progression of MD. I have been going to physical therapy twice a week. I'm able to walk with leg braces and was able to before the stem cells. So I will be having an interesting few months but it will be a good year and that's for sure!
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