I was lucky enough to meet Colleen at my son’s preschool class this year. Her sweet son B and Jackson go to school together. I would love to personally name her super mom. She has a heart of gold and sweetness just oozes from her! I am so inspired by her strength.
There is so much more to this amazing family than you may be able to see at first glance. You see sweet B was diagnosed with Duchenne, a form of muscular dystrophy that affects 1 in 3600 boys, when he was 2 years old. Duchenne results in a loss of strength in the muscles and causes a shortened life span due to this weakness. There is hope. There is a new medication that is in the hands of the FDA that has shown to hold off symptoms and therefore offers a better quality of life. Only the FDA is not being quick to approve this drug. This is devastating to the Duchenne community as time is not on their side.
To know little B is to love him. There is such vibrance and joy in his whole being! Please join us in this fight by praying for the best outcome for all of these boys and that this drug will soon be passed by the FDA. You can learn more about the Labbadia family in this local news story HERE.