Congenital Myotonic Dystrophy is the most severe form of this disease because it means that Sebastian has been effected and showing symptoms of this disease from birth. When he was born, he wasn’t able to breath on his own or eat anything by mouth. Although he has significant developmental delays, we strive to give him the best life possible. Over time and in very small steps, we’ve seen tremendous improvement. He is now able to walk on his own, and he enjoys climbing on things he’s not supposed to like typical kiddos. He still has to sleep hooked up to a ventilator at night, but he’s able to breath completely on his own while he’s awake. He’s still not able to eat or drink anything by mouth or communicate verbally. I honestly feel that he understands everything we say though, especially when he’s being scolded for doing something he knows he’s not supposed to be doing. J Sebastian enjoys playing outside with his favorite people, like his dad, Don, or his grandpa, Elmer. He even has a special bike that he like to ride around the neighborhood. His all-time favorite activity is being in the water (but don’t tell his doctors) whether it’s in a tub or in the pool.
Thank you for taking time out of your busy day to read my story, and I hope you will support this cause. Just click here to make a secure online donation. I know there are many different walk events out there, but I chose MDA Muscle Walk because MDA provides more comprehensive services to families with muscle diseases than any other organization.
Christina Carino Vongprachanh