“Team Elmo” – Our Story
by Emily Kirkland, Team Captain
This is our first year doing the walk and we are all very excited.
I was diagnosed a few years back with Limb girdle muscular dystrophy. I was the first one in my family to have it, so the doctors were testing for recessive genes, especially if I was planning on having children. In 2012, I gave birth to my son Lucas. He was initially a healthy little baby with no issues besides delayed milestones. We went to an allergist for a hive issue, and that doctor ran some blood tests. The results came back that Lucas' Liver enzymes were up. The next blood test was his CK level, which hit 15,310. We then went back to CHOP. We are now waiting for approval to proceed with blood tests to rule out Duchenne. Genetic counselor revealed that they never tested for the dominant genes for dystrophy in me. I am now an official dominant carrier of dystrophy. For so many years, I ignored the fact that I had even had a type of muscular dystrophy. Now with my 2 year old son having some type of muscle disease, that makes things a lot more serious. We want to be a part of the MDA and are very excited to help in raising money for a cure! I am trying to get everyone I know involved!