My wonderful son Zak was born with a rare genetic disease called Prader-Willi Syndrome (PWS). Although my wife and I may not have felt lucky at the time, we now know that we were blessed with good fortune when Zak was diagnosed as a newborn. Kids were mostly being diagnosed with PWS later in life, but we had the benefit of an astute neonatologist.
As we tried to wrap ourselves around the idea of a disease characterized by things like “insatiable appetite” and “impaired cognitive function and behavioral patterns,” we were told that because the progression of PWS is highly predictable, we had the advantage of a kind of road map by which we could navigate Zak’s health. Doctors said if we poured enough energy into helping him thrive, there was nothing that wasn’t possible. They were right.
We immediately moved to do what we could for Zak with the goal to make his life as fulfilling as possible. As a practicing chiropractor, I had medical background but was used to “fixing” people with my hands. Helping Zak would require a different kind of effort.
Getting involved early with organizations like YAI/National Institute for People with Disabilities Network for early intervention helped enormously. Zak was able to get into pre-school and attends school today at age 7. He’s learning math and even reads to us, exceeding all our expectations academically.
In addition to his studies, Zak thrives socially and with extra-curricular activities: he plays Little League baseball and soccer. He has lots of friends and people know him like a mayor wherever he goes. He’s friendly, gregarious and doesn’t have a mean bone in his body.
We’re also committed to help others like Zak. We founded Zak’s Promise: Progress with Support, Inc. to raise awareness and fund research to help find a cure. I joined the board of the Genetic Disease Foundation (GDF), which raises funding for research and education towards the prevention and treatment of genetic diseases (www.geneticdiseasefoundation.org). Through a combined effort of the Prader-Willi Syndrome Association (I sit on their board) and the Foundation for Prader-Willi Syndrome, I met with the Chairman of the NIH to advocate for more focus on PWS.
And perhaps the most remarkable thing about Zak is that because of who he’s become, he himself takes part in opening doors for himself and others. His enormous personality and infectious smile, strong will and determination, make him an inspiration. By serving as the “face” of a poster for the YAI, Zak helped raise $1.5 million for families in the New York City tri-state area. No doubt he’ll continue opening doors for others throughout his life.
I consider myself very lucky to call Zak mine. It’s been a great ride so far, and together as a family, my wife Jacqueline and I, along with Zak and his little sister Lily, will continue to turn obstacles into opportunities and live life to its fullest.
Jamie H. Bassel