Neil’s young voice was one of many to speak out about DIPG Awareness and Childhood Cancer in general. This week a few more voices are striving to be heard in Washington, D.C. Three days ago, the DIPG advocacy group issued a press release. The header expresses a sense of urgency – A Moonshot for Kids: DIPG Awareness Resolution H.Res.69 Runs out of Time as Childhood Cancer Advocates Return to Capitol Hill. It continues:
“Since the DIPG Awareness Resolution was first introduced in January of 2016, roughly 1200 more children have died of the deadly brain cancer while the bill has had no attention from House Leadership despite growing support nationwide. The DIPG Advocacy Group returns to fight for this bill which boldly confronts the lack of human values in the medical research industry.”
It concludes with the strong voice of a mother, Janet Demeter, who lost her child, Jack, age 4, to DIPG:
“…it [DIPG] exemplifies in a powerful way the marginalization of childhood cancers and lack of funding for research. Every child’s life deserves hope, but there is none for these children with DIPG. The first iteration of this bill we used to call, ‘Moonshot for Kids.’ Most experts familiar with the disease agree that, if they could find the cure to this one, they might just find the cure to brain cancer. I know they can if science put a man on the moon 50 years ago.”
To put this into perspective, according to the American Society of Clinical Oncology (ASCO), while about 3,560 children will be diagnosed with a brain or central nervous system (CNS) tumor this year, it is estimated that 16,830 adults (9,490 men and 7,340 women) will die from primary cancerous brain and CNS tumors. DIPG, one of the deadliest pediatric diseases with a dismal less-than-1% survival rate, has an average age of incidence between 5 and 9 years old. Diagnosed at age 19, Neil was even more of an outlier. He sat on the cusp of childhood and adulthood, just old enough to make his own bold decisions regarding treatment and to clearly articulate the experience of the disease. When DIPG robbed him of his ability to speak and to write about the experience, he spoke to us with his eyes, and this we documented with a few telling photographs.
Stories show far more than statistics, and the sea of voices telling the stories intend to create a big wave. I can imagine Neil’s spirit, riding the crest with a whole bunch of younger souls, all destined to create a sea of change. That is the objective of my writing and sharing his story.