I am a member of the Cure CMD organization and am coordinating and participating in the Kansas City marathon to raise awareness and valuable funding for research for my incredible 11 month old daughter Olivia, and all other children that are afflicted with congenital muscle disease. Olivia was born with a rare neuromuscular disease that is a result of a mutation in her LAMA2 gene.
Olivia struggles to do the things that we all take for granted, like hold her head up, bear weight through her arms, and sit for extended periods of time. All of that said, Olivia shows more conviction and willpower than I have ever seen, and she continues to push herself to try to do more every day.
There are currently no therapies to help these children and much of this comes down to funding. We don’t know if Olivia will ever crawl or walk, but we have a lot of hope based on the recent strides that Cure CMD and the medical community have made, and we believe that our actions will help to expedite these therapies that will provide children with an opportunity for a better and longer life.
Thank you for taking the time to read our story and for supporting us on our journey!