My name is Valerie Sobel, and this is my first time as a regular blogger.
As I sit to gather my thoughts about how best to tell you in a nutshell about the experiences of the past 10 years since founding the Andre Sobel River of Life Foundation (ASRL), the phone rings. I learn that Daniela's two-year struggle has ended.
She is the beloved 14-year-old daughter of Bernardine, one of "our" single mothers. Daniela had lost the battle when her cancer had irreversibly diminished her from ever again being the competitive tennis player that she once was. Her passing reinforces this organization's commitment to give those like Bernardine and Daniela (nearly ten thousand family members to date) the gift of time together.
When we pledge to cover rent, food or insurance, we free up single breadwinners from the unimaginable anxiety of having to cope with the medical, emotional, physical and financial catastrophe that has suddenly befallen them. We protect them from having to make cruel decisions that no parent of a catastrophically-ill child should need to make. The choice between staying with their child who needs them or remaining at work in order to continue to provide as before for their family. It is NOT as before their child's diagnosis, and the choices available to them is laden with an unseen kind of injustice that the lack of money causes. Our mission oversees the non-medical, the financial aspect of their ordeal.
The Andre Sobel River of Life Foundation bears the name of my teenage son who died from a malignant brain tumor. The loss my family experienced extended to losing my husband and mother within the same year. I have learned since then that nearly half a million people annually in the United States experience a potentially terminal diagnosis of their child, and now know how people that are alone/single navigate their heartbreak at such a time.
We are the only national organization of its kind with the single focus of work and experience on this topic. I will write about the people, the stories, the studies and the initiatives that we have engendered. Very real slices of life, about people who but for the grace of God could be any of us.
I plan this to be a forum for better understanding of our constituency, what we do, who it affects and how it helps. I wish to start however by presenting the only initiative that we maintain besides our core assistance program. The Andre Sobel Essay Award is in its 10th year and is a monetary prize for young cancer survivors. It is to be used by the winner as they wish, hopefully to fulfill a cherished desire. Their unique voices deserve to be heard, and their extraordinary essays will be posted over the next month.
May Daniela, her younger brother Andrew and their mother Bernardine, be blessed by knowing that in the face of their inevitable destiny they have done well. They served each other with a love so great that only families can who are called to the holy and unreasonable service of a terminally-ill child can.
We as an organization often light a candle to honor the desperate battles that are silently fought with strength and dignity by these families. If you are so moved, please go to our website and "light a candle" to illuminate the way for Daniela on the road that we each are sure to travel.
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