Meet the amazing Lucy!
Lucy Ferlita is the daughter of our founder, Lisa, and her husband Russ. She is big sister to brother Anthony. Lucy is vivacious, energetic, smart, and ready to move in her new motorized wheelchair.
Lucy is also the only person living in the United States with a diagnosis of EMARDD, or early onset myopathy with areflexia, respiratory distress and dysphagia. Very little is known about this serious disease that has left her with low muscle tone and the need for a feeding tube to eat. Lucy is Lisa and Russ' second child with EMARDD. Their son, Vincent, passed away from EMARDD in 2011.
She is a fighter through and through. In June 2018, Lucy and her parents traveled to Washington D.C. to participate in Family Advocacy Day. Lisa, Russ, Lucy, and many other families asked Congress to support legislation like the Advancing Care for Exceptional Kids Act (ACE Kids Act) which ensures medically complex children like Lucy have access to the specialized care they require to survive and thrive. As Lisa said at the time, "Often, children with complex medical needs like Lucy do not neatly fit into existing health care categories which makes navigating the already complex state and federal systems even harder. We hope that sharing our experiences will help to improve the process and ease the burden faced by many parents who are now beginning their journey with their medically-complex child."
In 2019, ACE Kids Act became law! Lucy continues her adventures with Broadway Magic Foundation as she inspires our Creative Movement Program for mobility limited and medically-complex children.