Our son Finley was diagnosed with a rare form of congenital muscular dystrophy called CMD LAMA2, or merosin-deficient CMD. There is currently no cure or treatment for this disease. Most of the children with this condition will never walk and are faced with tremendous health challenges, as even a simple cough or runny nose can turn into a serious lung infection requiring hospitalization. The lifespan of children with this disease is greatly shortened due to respiratory distress and most children do not live past young adulthood.
Finley may never run, jump, or dance like we all did as children. These kids struggle to lift their heads, bear weight on their arms and legs and most must navigate their lives from the confines of a wheelchair. All of that said, there is significant hope in the medical community that treatments are within reach.
So on July 13th we will be Finley's legs and he will fill our hearts. As part of the Boilermaker, we are creating a team to run in the race as an effort to find a cure for Finley. 100% of the contributions raised for Cure CMD will be used to fund research. The race is comprised of a 3 mile walk held on July 12th, a 5k or 15k run on July 13th, which means anyone can realistically participate if they would like! Thank you for reading our story and supporting our cause, every thought, prayer, and dollar takes us one step closer to a cure.
Donations can be submitted here: www.crowdrise.com/footstepsforfinleyforcurecmd
to be apart of our team please leave a comment with your email address!