Maddy is silly and full of personality. Maddy loves listening to music and snuggling her puppy. Her mom, Alisa, jokes that Taylor Swift stays at the top of the music charts because of their household’s daily views of her music videos. This past year, she moved up to middle school and has been working on vocational skills. Her class is in charge of a coffee cart that prepares and delivers coffee packets (K-cups, cream/sugar, stirrers, etc.) to teachers and staff on Friday mornings. Her favorite part is pushing the cart and greeting customers.
Maddy was diagnosed with 2q23.1 Microdeletion Syndrome in December of 2009. At the time, there were less than 100 known cases of this deletion in the world. Since then, close to 300 individuals have been identified with the deletion and recently changed its name to MBD5 Associated Neurodevelopmental Disorder (MAND). Because MAND is so rare, there is not a lot of research on what to expect or how to work through challenges as they arise. Maddy’s mom says they were lucky that she received a diagnosis early and was able to receive life changing early intervention services.
Maddy is redefining what independence looks like for her every day! Her family is so lucky to watch her push through every challenge and prove that when you don’t know what to expect, anything is possible!
Family Connection of South Carolina provides services and resources to families who have a child with a disability or specialized healthcare need. Since 1990 we have served more than 100,000 families and today our services are needed more than ever. We focus on parent-to-parent support, guidance with navigating the complex healthcare system, and assistance with school meetings and special education plans.