When I was six years old I was playing T-ball like any other regular six-year-old boy would do. My mother and other people started to notice that I wasn't running as fast as other kids and that I could not lift my legs up as high while running. After going to many doctors, I was diagnosed with Muscular Dystrophy. I remember one of the very first neurology doctors with no bedside manners sitting in the room telling my mom that she needs to "move to a one-story house, prepare me for a wheelchair, and prepare me for life and death."
After we found out that I have Muscular Dystrophy, the next step was to find out which of the 40+ types I had. I had a muscle biopsy around eight years old that determined I had Becker's Muscular Dystrophy. I stopped walking when I was 11 years old and have used a wheelchair ever since then. When I was 14 years old I had spinal fusion surgery on the entire length of my back to attach metal rods along my spine to help my posture and stop the curvature of my spine. During the surgery they also did another muscle biopsy that still showed that I had Becker's.
High school wasn't the greatest experience for me. I did really well grade wise in all of my classes. I ended up 13th in GPA in my graduating class. Most of the able-bodied kids in my classes never really wanted to associate with me or become friends until they wanted help with their homework. Two of my best friends in high school also had Muscular Dystrophy. One of them passed away when we were still in high school and the other died after high school.
In general, Muscular Dystrophy is a muscle wasting disease. Therefore, depending on the type of Muscular Dystrophy determines how quick the muscles and potential organs decrease in function. Early last year my neurology Dr. had me have some bloodwork done for genetic testing to see if I had the correct missing link in my DNA to try out a new gene therapy drug for Becker's. When the results came back I found out that I not only didn't qualify for the new gene therapy drug treatment, but that I did not have Becker's Muscular Dystrophy either! This was very shocking news for me! A few months later we did a different DNA test and found out that I have Limb Girdle type 2E Muscular Dystrophy.
Up until a year ago, I always thought that I had Becker's Muscular Dystrophy. The majority of my life I had convinced myself that I did not want to have biological children because my disease would be passed down to them. Now that I have a different diagnosis my disease is not passed down to my children unless my future partner also has the same missing link in their gene like me, which is super rare and can be tested through DNA ahead of time. I feel like this has given me a new lease on life because I want to have a family and children of my own someday! I just hope I can find that before it is too late…
There have been many new drugs treatments for Muscular Dystrophy that have come out over the last few years with more to come. There is a company in Ohio working on early phase testing for gene therapy drugs that target the type of limb girdle that I have. This drug is hopefully two or three years away from being available to the public if effective.
Throughout my life the Muscular Dystrophy Association has helped me and my family by coordinating doctors appointments with my neurologists, making sure I get the right medical equipment ordered, and much more. MDA has also been trying to stay at the forefront for new drugs and treatments for Muscular Dystrophy. I hope that one day soon there is some kind of treatment to slow down or stop the progression of my Muscular Dystrophy.
For the last six years my family and friends have participated in the Muscular Dystrophy Muscle Walk in Phoenix. This has been a time for my friends and family to come together, fund raise, and walk for a good cause! This year my walk team (Justin's Pit Crew) has over 43 people signed up to participate. If you would like to join us for the walk on April 21st at 9 AM at Mesa Riverview Park please let me know! If you would also like to make a donation to MDA for my walk team here is the link: http://bndfr.com/7qqsm