Connor was diagnosed with MECP2 Duplication syndrome shortly after he was born, when a respiratory arrest and feeding issues landed him in the neonatal intensive care unit at Children’s Hospital of Oakland. We had no idea what this diagnosis meant, and neither did the team of doctors who was caring for Connor. An internet search led us to Katie’s Clinic, a very special place for MECP2 disorders founded by a mom of a daughter with Rett syndrome in our local area. There we met other families affected by this diagnosis and a whole network of people working hard behind the scenes to fund research and hasten the promise of a cure. The 401 Project members and the progress they’ve achieved so far has inspired us to join the fight in raising awareness and much needed funds for the very promising cures that are closer than ever.
Join us in supporting this work and donate in honor of Connor, who struggles everyday against the hardships of the REVERSIBLE syndrome!