Meet Nova: 2018 Family Advocacy Day Champion
Nova is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Nova will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.
Nova is an outgoing 8-year-old from Massachusetts who loves to read, build with Legos, play piano, and hang out with her friends.
Nova was also born with a rare craniofacial anomaly called Pfeiffer Syndrome. It affected the growth of bones in her skull, face, neck and arms, causing them to fuse before she was born.
Nova’s family found their way to the great care team at Boston Children’s Hospital just days after her birth, and specialists there have coordinated and managed her care ever since.
The road has not always been easy for Nova; Over the last eight years, she has had over a dozen surgeries at Boston Children’s. Surgeries to help her breathe, to get nutrition, to improve her access to sound, to allow her brain room to grow, and to protect her eyes have all been vital for this young pianist.
With all of her care needs, Nova ends up spending a lot of time at the hospital. She often has to miss school and social events for appointments or hospitalizations, but never lets it get her down. Throughout all of her care, Nova remains upbeat and positive — this jokester goes out of her way to get a laugh out of doctors, nurses, staff and other patients whenever possible.
Nova’s parents treasure her incredible sense of humor and killer dance moves. This awesome family will travel to the nation’s capital this month to tell lawmakers about the special care needs of kids like Nova and to remind us all that the world would be really boring if we all looked the same!
Join us in welcoming Nova to 2018 Family Advocacy Day!