The Story Of Maya Rose

Maya-Rose is ten years old. She is cute and loved. But she has never walked or talked. When she was eight months old, her father, Alex Dwek, called her pediatrician because Maya-Rose still hadn’t sat up on her own, and the way she bent her legs concerned her family. Eight months into parenthood, Alex and his then-wife started to search for help. Maya-Rose has visited doctors in New Jersey, New York and Philadelphia. None have ever been able to identify her diagnosis. She has undergone MRI's, spinal taps, a biopsy and Botox injections. She also has scars. She wears orthotic boots to position her feet correctly while she uses a gait trainer. She has had speech, physical, occupational, and even aqua therapies in effort to correct what her mystery diagnosis has caused – but treating an illness is difficult when nobody knows what it is. Because Maya-Rose doesn’t talk, meeting her needs is a challenge. Sometimes, she responds by using sign language. Other times, she gets frustrated by how hard it is to communicate, and melts down. Her inability to walk is exacerbated by the muscles in her legs, which tighten over time. Other options exist for Maya-Rose: new therapies, and ground-breaking medical technologies that are available outside the U.S., that may do what other procedures haven’t yet: provide a better future for Maya-Rose. As a single father, Alex aims both to be Maya-Rose’s caregiver, and to provide for her as an acting coach. To try new medical methods for helping Maya-Rose will require the support of others. If you are able to give of your time, talent or treasure as part of the #MayaRoseProject, please click here