At almost 4 months of age, our sweet boy, Louis, began experiencing seizures. After spending 8 weeks in PICU at Sydney Children’s Hospital Randwick, we received a diagnosis that shook us to the core. Louis was diagnosed with Congenital Disorder of Glycosylation. His subtype is one of the most rare and he is one of around 40 known people in the world with it.
Due to the rarity of Louis' condition there is a lot that is unknown, including how this will impact his life as he grows. We are doing all we can with him to help him achieve his goals and develop as much as he can, however there is a whole team of people around the world working on researching this condition and gaining as much knowledge as they can about it. They are a huge support for families like ours who are navigating this new path we find ourselves on.
We have both made it a goal of our own to do as much as we can to help the CDG community and researchers over the world.
So we have decided we will both run proudly - alongside some fantastic friends and family - in the Gold Coast Half Marathon (Michael) and Fun Run (Amy) for CDG Care.
We would love it if you could help support us in this in anyway you can and help us achieve our goal!
Amy, Michael & Louis
*PLEASE NOTE DONATION AMOUNTS ARE IN US DOLLARS *