Zachary Brandon Bernstein was an 11 year-old boy who suffered from DIPG (Diffuse Intrinsic Pontine Glioma). DIPG is a type of brain tumor found in the pons, a part of the brainstem near the top of the spinal cord. DIPG primarily affects children, with most diagnoses occurring between 5 and 9 years of age. DIPG makes up 10-15% of all brain tumors in children, with about 100-150 new diagnoses per year in the United States and about 300 per year in all of North America and Europe. Unlike many other pediatric cancers, there has been little progress in the development of treatments over the last few decades. Unfortunately, fewer than 10% of children with DIPG survive two years from diagnosis. Currently there is no cure.
Prior to his illness, Zachary was an energetic, creative, quick witted, dynamic, funny little boy. With his captivating smile and infectious giggle, he had an amazing ability to make people laugh, regardless of the circumstances.
Zachary was determined to attend school every day and achieve excellent grades. Despite his illness, he sat among his classmate’s, was actively engaged in the course curriculum and found ways to make his friends laugh and enjoy his day. He wanted to be like every other 6th grader while enduring the routine of medical check-ups, treatments, physical therapy, and radiation in addition to having undergone three brain surgeries. These things didn’t slow him down as he was always focused on the next school day.
This young boy’s persistence and perseverance drove the adults in his life to help facilitate collaborative discussion across hospitals, institutions and labs to find a cure. His determination provided the momentum for leading medical professionals in pediatric brain cancer to work as a team to help this amazing child. As one doctor said, “You are making me a better doctor.”
Zachary was our Edgar (from the Disney play The Aristocats), our Brown Belt, our Scholar, our Singer, our Comedian, our Entrepreneur, our NY Cosmos Team Captain, our LeBron James Jersey wearing Miami Heat Fan and our aspiring Pablo Picasso. Zachary was an inspiration and hero. He always had a smile and never shed a tear.
In the later stages of his illness, as this disease took more and more of his abilities away, he taught us the value of creative expression through art. Using a variety of mediums, he was able to share his emotions and take pride in the beautiful creations he made.
The Fly A Kite Foundation was established to honor Zachary’s memory, share what he taught us about illness and actively participate in finding a cure for pediatric brain cancers, specifically DIPG. He taught us lessons to share with the world: regardless of one’s abilities or disabilities, creative expression is a priceless outlet; humor can be found in the simplest of situations; “normal” is relative to any given situation.
Please join us in the fight against DIPG & pediatric brain cancers.
David & Deena Bernstein
Founders, The Fly A Kite Foundation
Zachary sings “Let’s Go Fly a Kite”
Zachary used a hair dryer and taped crayons to canvas. As the wax dripped, Zachary directed the melting crayons in a blended picture. He titled his art “Morning Joe”, 2/8/2014
Zachary painted the floral arrangement using oil pastels. His work won him an All County Award in Spring 2013.