Learning that your child has a disability can be devastating. Alex Dwek understands this only too well, as his daughter, Maya Rose, suffers from a rare ailment that leaves her unable to walk and talk. Through The Maya Rose Project, Alex hopes to raise awareness and show parents in similar situations that they aren’t alone.
Alex’s story may hit close to home for parents of disabled children. At the age of eight months, Maya Rose was unable to sit up and her legs were unusually bent. There were no signs of improvement as she grew older—in fact, she couldn’t walk, stand up, or talk. After years of tests, Maya Rose was diagnosed with a rare disability: MR-Autosomal Dominant-19.
Today, Alex is a single father who works full time in the New York City area. His main priority is caring and providing for Maya Rose while raising funds to assist with medical treatment. It’s a challenge shared by many parents of children with disabilities.
Caring for a disabled child is a life-changing experience. As Alex learned, it can be isolating. But turning to those in similar situations can help. Joining a parent group offers an immediate bonding experience, as it connects individuals dealing with the same crises with one another.
Simply spreading the word in the local community can help, as it did Alex in 2014 when a local church and a non-profit organization collaborated to host a benefit fundraiser for Maya Rose. Books written by parents of children with disabilities may also prove helpful, as can websites dedicated to supporting those with chronic illnesses or child development issues.
There’s a range of emotions involved in caring for a son or daughter with a disability. It is at once sad, challenging, shocking, confusing, and downright overwhelming. By sharing Maya Rose’s story, Alex brought attention to his cause and gleaned support—a worthwhile and often priceless element when dealing with such a life-altering issue.
Alex hopes that by sharing his daughter’s story, he can be a voice for the parents of kids with disabilities who may be struggling, and for those children with special needs. You can learn more about The Maya Rose Project on the website, or by emailing Alex directly.