THE WARTIME MEMOIRS OF RABBI RAFAEL BERDUGO
By: Kelly Jemal Massry
It is a story circulating our community and generating unprecedented grassroots action: the fight of six-year-old Houstonian Rafael Elisha Meir Cohen, as he battles the brain cancer that is ravaging him.
In October 2012, Rafael Elisha was diagnosed with anaplastic medulla blastoma, a rare and malignant form of brain and spinal cancer. Immediately after the diagnosis, Rafael Elisha underwent surgery that removed 70 percent of the tumor, but left him unable to speak, walk or eat. He has since recovered the ability to talk, but still cannot swallow or walk. Though he entered a short remission after rounds of chemotherapy and radiation, he relapsed in September of this year. Now, his doctors at Texas Children’s Hospital have said there is nothing more to be done.
But his parents are not giving up.
“We have to do every single thing that we can,” says his father Rabbi Yaakov Cohen. “All of our rabbis have told us this – ‘You have to look for every single means possible’ – and we’re doing it, constantly.”
Currently, their hishtadlut(effort) has taken on the form of pursuing an alternative, experimental treatment performed at the Burzyinski Clinic in Texas. It’s called Antineoplaston Therapy and is a process by which antineoplaston compounds are used to treat cancer. However, in 2012, in light of controversy surrounding the treatment, the FDA withdrew its approval of this method, pending further investigation. The agency may reapprove the treatment in three months, but Rafael Elisha cannot wait that long. He needs this medicine immediately.
In the past, the FDA has granted an “expanded compassionate use of exemption” to children facing extreme medical emergencies. The Cohens desperately hope they will grant one for their son, and authorize the only treatment that has any chance of saving him.
The Race to 100,000
Last month, a petition was drawn up to help Rafael Elisha’s cause, and a massive lobbying effort is underway to secure 100,000 signatures. It is hoped that this outpouring of support, coupled with political pressure and the influence of social media, will sway the FDA’s decision in Rafael Elisha’s favor. An inspiring grassroots campaign, spearheaded by community member Linda Sedacka and aided by 40 tireless volunteers, has sprung up to gather signatures and raise awareness of the boy’s condition. As of this writing, there are 79,964 signatures, with 20,000 more needed to reach the goal. With people signing by the minute, hopes are high that by the time this magazine goes to press the target number will have been met.
But there is so much more we can and must do for this family of eight and for Rafael Elisha, who continues to suffer excruciating headaches as the tumor creeps up the right side of his brain. Heis precariously weak because his stomach is not absorbing any nutrition, as he can’t keep down any food he is given. Recently, while conscious, he suffered a devastating seizure in which he lost control of most of his body. “I am growing crazy!” he screamed as the convulsions took over. “Imma, Abba, make it stop!”
A Call for Prayer and Charity
Prayers are desperately needed. Please pray with heart and conviction for the complete recovery of Rafael Elisha Meir ben Devorah. Furthermore, the family is in dire need of financial assistance, as Rafael Elisha’s care is no longer covered by the family’s insurance plan, and the parents are unable to work given the round-the-clock care their son needs. Even besides medical costs, the family is struggling to meet their ordinary monthly expenses. A fundraising campaign has been launched and has already raised the initial goal of $100,000, though much more is needed. Those wishing to assist the Cohen family are asked to visit www.youcaring.com/medical-fundraiser/help-raphael-elisha-meir-ben-devorah-cohen/104108.
Additonally, a care calendar has been set up for arranging daily meals and the tending to the family’s other needs. For more information, please visit http://www.carecalendar.org/logon/129886and enter Calendar ID: 129886 and Security Code: 2979 to see how you
Finally, many Torah leaders have urged the public to take on mitzvotin Rafael Elisha’s merit, such as shemirat halashon(avoiding negative speech about other people) and paying greater attention to tzniut(modest attire).
“The family has rock solid emunah,” says Linda Sedacka, who has been in touch with the boy’s mother. The same is true of Rafael Elisha, who continually cries out for Hashem to help him. And now, let us all cry out to Hashem, as well, with heartfelt prayer, charitable hearts and a stronger commitment to Torah and mitzvot. It is our hope that in the merit of these communal efforts, Rafael Elisha Meir ben Devorah will recover and go on to lead a happy, healthy childhood.