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In 2005 we welcomed our first child, Alex, into the world. Like most new parents we were over the moon with our new addition. When Alex was about 6 months old, my wife began to suspect that something was wrong. Alex was missing milestones and seemed to have a hard time lifting his head and maintaining physical strength and coordination. The pediatrician agreed with our assessment and we were sent to a specialist in San Francisco. Blood tests were taken and they confirmed the worst—Alex was missing some important genetic material in some of his chromosomes, an anomaly labelled “mosaic chromosomal deletion syndrome.”
We were devastated but simultaneously relieved to have confirmation of the problem. Now that there was a diagnosis, maybe we could find something to “fix” our son. We met with a geneticist who gave us the name of our son’s condition: Phelan-McDermid Syndrome. We also learned that Alex was one of only about 450 people (2005) in the world diagnosed with this very rare genetic disorder. The most heart-breaking part of this was the realization that there was no fixing his condition. Our son would never have a normal life and would always need full time, around-the-clock care for the rest of his life.
Like many parents who experience this type of life-altering news, my wife and I couldn’t help but wonder if there was something we had done to cause the problem. We felt a mixture of guilt, sadness, disbelief and anger that this was happening to us. We eventually came to a place of acceptance about Alex’s prognosis and what his future would look like. We also joined the Phelan-McDermid Foundation, which put us in touch with other families that were going through similar experiences. It was an eye-opening experience to see people with this condition that were advanced in age—60 years and older. With proper care, individuals with this condition can live for a long time even though many of them have slightly weaker immune systems than most people and get sick a lot.
Meanwhile, life went on. There were jobs to be worked and bills to be paid, and the world was not going to slow down while we figured things out. We were a solidly middle-class family and both of us worked. We were fortunate to have extended family members to help with Alex. In 2007 our daughter was born—happy, healthy and 100% “normal.” We were thrilled and felt we had been given a second chance.
When Alex was about three years old and sporting a full set of baby teeth, he began to chew on everything: his fingers, windowsills, the edges of tables—anything and everything went into his mouth. This is a behavior very common to his condition, but it’s hard to express how problematic this was. In utter desperation, I went to the local hardware store and began experimenting with making things that were safe for him to chew on. This was the beginning of the Chewnoodle. After trial and error and numerous prototypes, I was able to develop a product line that used non-toxic, safe FDA-approved materials, was engineered to stay attached, and molded to specific sizes & shapes. The Chewnoodle has been a life-saver for all of us, and allows Alex to satisfy his need to chew in a safe, fun, effective way. The Chewnoodle is very effective at satisfying oral motor sensory needs for individuals with Phelan-McDermid Syndrome, Autism and Down Syndrome.
It has at times been a challenge to see the silver lining in our situation. And yet, there have been positives that have come from this unique experience of having not one, but two special needs children (our youngest has Autism). It has taught us patience and acceptance and shown us that we can still enjoy and embrace life despite the challenges we are faced with. This is true for everyone, to a certain extent, with or without the road-bumps of “special needs.” It’s a valuable lesson and a mind-set that helps in other areas of life. We all have challenges and hardships. It’s what you do with those problems that tells the true story and hopefully teaches you to discover the unique sweetness of life despite imperfections, surprises and problems.
--Gary Bala, April 2018
Creator of the Chewnoodle