Meet Sadie

Sadie was born in March 2016 following a normal and healthy pregnancy. Due to an unanticipated breathing issue hours after her birth she needed to be airlifted to Levine Children's Hospital in Charlotte. She was put on a ventilator and was diagnosed with respiratory distress syndrome. Possibly as a result of the ventilator, Sadie developed a grade III intraventricular hemorrhage.

Sadie spent the first 72 days of her life in the hospital for numerous tests and underwent several surgeries including having a brain shunt placed. When Sadie finally got to go home all of her issues faded away and she was just our sweet, healthy, and smiley Sadie. However, several weeks later we got the devastating call that would forever change our lives.

Sadie’s doctor informed us that Sadie had tested positive for the very rare genetic disorder, Sanfilippo Syndrome, a neurodegenerative disease with no cure and ultimately results in death by a child’s teenage years.

While this was a devastating blow to our family we knew there was no time to waste. We immediately mobilized a dedicated community made up of family, friends, and supporters and got to work finding other families who had children with Sanfilippo Syndrome and connecting with foundations who had already begun the fight to find a cure.