By now many across the Jewish world are acquainted with the tragic saga of Raphael Elisha Cohen, the six year old boy in Houston, TX battling medulloblastoma, a vicious form of brain cancer. What started out as a local story in the Jewish Herald Voice, Houston’s Jewish community newspaper, was picked up by Aish.com and other international Jewish news outlets including the Times published pieces about Raphael Elisha’s plight.
The articles featured links to a fundraising website set up to assist the Cohens with the expenses they have incurred for medical treatment and the day to day living costs of a family of eight, and also a link to a petition requesting that the FDA issue a compassionate use waiver for a highly controversial experimental medication developed by the Burzynski Clinic.
The story has gone viral with breathtaking speed. Thousands of dollars have been donated by people all over the world, providing the Cohen family with the security of knowing that right now they can focus on Raphael Elisha’s illness. The petition has garnered over 80,000 signatures, twice as many as there are Jews in Houston. The response has been incredible, but unfortunately not all of it has been positive, nor has all of it been helpful to the Cohens in their fight for Raphael Elisha’s life.
As a neighbor of the Cohens and someone closely involved with helping the family as they deal with this nightmare, I fear that however well-intentioned those using Raphael Elisha’s story to denounce the Burzynski Clinic may be, those efforts are distracting from the fact that he is a very real little boy whose parents have been told by conventional medicine practitioners that nothing else can be done – their son is going to die.
I am not a fan of the Burzynski Clinic, and I agree with many of the criticisms leveled at Stanislaw Burzynski and his treatments. But this is not about my opinion of the clinic. Raphael Elisha’s parents are the only ones with the right and responsibility to make the best decisions they can in a horrible situation that no one who has not faced the loss of a child can possibly understand. The Cohen family is fully aware of the controversy. They have read the articles on the clinic. However, they have also spoken to people who are convinced that Burzynski cured their cancer. As Raphael Elisha’s parents, they have decided to pursue this course of treatment if it is made available.
In the meantime, the family continues its frantic race against time as they search across the globe for other experimental medications that could be a fit for Raphael Elisha. And friends and supporters of the Cohens continue to pray, donate money, and sign the petition.
I have seen firsthand how much strength and comfort the Cohen family is drawing from the support they have received, and I believe that this strength is helping Raphael Elisha fight. If you choose not to sign the petition that is fine, but please, allow the Cohens the dignity they deserve by respecting their right to make the choices they deem fit for their child. Publicly fighting the Burzynski Clinic in Raphael Elisha’s name will only bring more pain to an already suffering family.
At this critical hour, a very sick little boy needs your prayers and support, and his family needs your empathy and understanding. Together, may the merit of our unity bring a complete healing and refuah shlema to Raphael Elisha Meir ben Devorah.
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Randy Barnes is the Director of Development for a mental health advocacy organization in Houston, TX. A veteran Jewish community professional, Randy is married to Jennifer, & is the father of two boys.
Article may be reprinted with attribution to the author.