I live in a community, Maplewood, N.J., where people care deeply about one another and when a young boy in our hometown was diagnosed with a brain tumor nine months ago, everyone mobilized and made a plan to support the family. This 12-year-old boy, Kohl -- one of triplets -- died in the early hours of July 24 and left his family and friends devastated and reeling with loss. We all watched him work hard to heal and fight to live, but this brain stem tumor called DIPG, is a vicious unstoppable cancer, even with treatment at top medical centers in the U.S. Kohl was relentlessly brave and so were his parents and brothers.
Meals were made for the family and left systematically at the family's home and the "Caring Bridge" helped us all keep in touch online so that we had the news of his progress. A community foundation, HK, joined with the citizens of Maplewood to raise money to help the family meet their mounting expenses. Kohl's friends stayed close by and play dates flourished in between hospitalizations.
My sons were part of the network of kids who loved Kohl and who love his two brothers, Austin and Brandon. On Aug. 4th, we as a family -- among hundreds of Maplewood residents -- went to the funeral at Christ Church in Summit, N.J., to be together; to hear about Kohl, a gifted student and athlete. The striker of his Cougar travel team and the A+ student was vanquished, and we all wanted to be together to understand this tragedy and have some peace. Peace was achieved, and though we will take a very long time to heal, we have this community and its powerful connections to count on and support us through our mourning.
Because of my work, I can't help but think about the orphans and vulnerable children around the world who get sick and die of simple preventable infectious diseases and complicated diseases that may never even be diagnosed, and certainly not attacked with the force of sophisticated medical power as was the case for Kohl. Currently, eight million children die each year from preventable diseases, and they most likely die alone in squalid conditions without the benefit of the kind of sweetness that Kohl had at the end when his parents and brothers sat with him, slept with him, and wept for him.
The lack of dignity for children living in adversity at these moments makes me sad and adds to the burden we should all shoulder for the millions of impoverished children who live around the world. They are extremely poor, are starving for food and education, lack access to vaccines and medical care, and will have a blighted potential to become "something" in this world.
The final insult is that they may die alone. Their death is not dignified. Children should be revered and humanity should abound as it did over these past nine months as we all tried to fight the inevitability of Kohl's death. He had what is the right of any child... protection, respect, and freedom to express fears. He did not die alone. He went to heaven for all of you with faith.
Can we guarantee heaven for the millions of children who die alone in this world? How is it possible that a sick child can be allowed to die alone?
On Tuesday morning my team heads to Haiti to unveil a new soccer program for impoverished children. We will take a moment to dedicate the tournament to the memory of Kohl, the striker who wore number 14 on his Cougar jersey. He symbolizes the courage inherent in all children.
Viv avek Kouraj.
Follow Dr. Jane Aronson on Twitter: www.twitter.com/wworphans