By David Bernstein
I read with great interest Cindy Campbell’s story in the previous issue of this newsletter about the devastating heartbreak her family endured during the loss of their beautiful 5-year-old son Ty. One can’t fathom why these deadly diseases take our children from us at such a young age, nor can anyone fully understand the toll it takes on the family and community throughout the entire journey of care.My family lost our beloved Zachary on March 12, 2014. He was diagnosed with a diffuse intrinsic pontine glioma (DIPG). The disease took our beautiful boy in nine months. He was 11 years old. As parents, we do everything we can to try to insulate and protect our beautiful children, and nurture them into the adolescents and adults we dream of. Unfortunately, for some of us there are those unforgiving moments in which we join the elite “club” (not by choice) of those who truly understand the emotional roller coaster, and who know what we would give up for “One More Day.”
September was Childhood Cancer Awareness month, a time to honor and remember children and families affected by these rare diseases, and to help give kids with cancer better outcomes by supporting the foundations, charities, nonprofits, hospitals, and other organizations that share the mission of raising funds for research.
After Zachary passed away, I had heart-to-heart conversations with our medical team. I asked them, “how far off are we from finding a cure for children with DIPG and other pediatric brain cancers?” To my surprise they all claimed we are four to six years away. My immediate question was “Why?” They all responded… “Lack of funding.”
I was stunned to learn that as much progress as appears to have been made…we are still so far away from a cure. Consider this:
- 96 percent of federal funding for research is for adult cancers, leaving only 4 percent for childhood cancers. Yet kids make up 20 percent of our population.
- Funding from large cancer organizations doesn’t help very much; less than 1 percent of the American Cancer Society’s total donations are directed toward childhood cancer research
- Pharmaceutical companies fund 60 percent of all adult cancer research, but they do virtually no childhood cancer research because it’s not profitable.
- About 900 adult cancer drugs are in the drug development pipeline, but almost none for children’s cancers.
After Zachary’s passing, my family was highly motivated to launch the Fly a Kite Foundation. The Fly a Kite Foundation is committed to children and families first. They are the primary reason for our existence. Our objectives are threefold:
- Creating art packages to provide a creative and therapeutic outlet for young brain tumor patients suffering diminished motor function.
- Providing grants to fund research and clinical trials for pediatric brain cancers.
- Providing parent and patient support and advocacy to the newly diagnosed.
For example, I had a conversation with a family on the West Coast whose 8-year-old son was a candidate for an experimental drug owned by Novartis. They were having challenges obtaining the drug and called me to help. Within 36 hours we received confirmation from Novartis that the drug would be made available under compassionate use. This is just one example of the good work we are doing that has a direct impact on families and children. We wanted to make a difference from day one, and I can proudly say…we have.
Not enough attention or funding is being allocated to these causes, or to these beautiful children. One month a year is dedicated to our families’ hardship and the honor we pay to the loss of our children. But the loss of a child to brain cancer should not be recognized over a 30-day period—it should be measured over a 30+ year lifetime. Moving forward, I will consider EVERY DAY to be September. We can’t afford to lose momentum and most of all…HOPE!
I am proud to be affiliated with the Children’s Brain Tumor Project and feel the heart and soul of this elite community is truly making a difference. On behalf of the Fly a Kite Foundation, we thank you from the bottom of our hearts.
Find out more at flyakitefoundation.org