[dropcap]Heartbreakingly[/dropcap], many of us have heard of the tragic plight of the  little boy from Texas, Rephael Elisha Meir ben Devora Cohen.

Aside from the fact that many of us are praying for him, a petition sent out on behalf of his family asks for 100,000 signatures so the government can make an exception and dispense non-FDA approved experimental drugs in a last ditch effort to save this precious child’s life. Conventional medical treatment has failed.

At first many signed the petition, not knowing exactly what they were signing. Then, USA Today came out with an exposé on the controversial antineoplaston drug and, more significantly, an expose of the doctor administering the drug, Stanislaw Burzynski. Based on the expose, he indeed does sound like an incompetent, creepily preying on the vulnerability of those desperately facing life and death circumstances.

To be fair, apparently there are a few people out there who attribute their cure from cancer to Dr. Burzynski’s controversial, non-FDA approved drugs

And to be honest, even before I knew or read about Burzynski, when I first saw the petition, I didn’t actually think the government — bureaucracy being what it is — would release whatever this last ditch drug was overnight and miraculously heal this ailing child.

Painfully, here was a profoundly terrified and heartbroken family grasping at straws, trying to do everything and anything it could to save its child.

Maybe the family wanted to try this alternative, hoping for a miracle.

Maybe, as parents, they wanted to try this alternative in order to live with themselves and know in the deepest part of their selves that they had tried everything to save their son.

[dropcap]But[/dropcap] what has ensued is a controversial reaction, with people out there, doctors included, actively preventing people from signing this petition in order not to bolster or legitimize Dr.Burzynski.

Of course, as a person who believes in modern medicine and the importance and responsibility of following regulations and protocols, that is the rational, normal response. I understand that.

And yet, a part of me really doesn’t.

Here is a family facing probably one of the worst tragedies: the pure and the innocent — a child — suffering. The family has tried everything and is making heart-ripping decisions none of us should ever have to live through, and chooses to risk using a controversial, experimental drug. It may provide the miracle the family is hoping for.

It is all one big nightmare. And the effects of experimental drugs are a nightmare. But the family is at a point where it has nothing to lose.

[dropcap]Heartwrenchingly[/dropcap], many of us have seen children treated for cancer by  conventional medicine, dying bloated and deformed, totally not themselves, from failed treatments or failed transplants.

A guiding Jewish principle we live by is “nose b’ol im chaveiro,” literally, to carry our friend’s burden with them. Empathy.

Now, sympathy motivates us to care about someone else who is in pain, and to do something about it in order to try to mitigate it. Sympathy is caring and often expressing it by doing something to help someone else — for example, in this case, sending money to the family to help out with the medical bills.

Empathy goes beyond that. While sympathy is feeling or even doing something for someone else, empathy is a deeper, emotional experience. Empathy is to transform our perspective to emotionally being  with the other in his or her hour of pain.

So on some level, if one is authentically in empathy with someone else, their needs become mutual. Yes, it can be argued that people in their immense pain sometimes need the mind, eyes and ears of someone outside their pain — not immersed in their tragedy — to help them make decisions. At the same time, that can also be the ultimate condescension, and feel like the worst slap in the face.

Sympathy acknowledges another person’s emotional hardship, is important and can be comforting. But sometimes it can also serve to make the recipient of the sympathy feel alienated and alone in their pain. Empathy, on the other hand, is to try to understand another’s pain, to be with someone in their pain.

Obviously it is up to each of us to discern in each situation what someone’s need is. And certainly sympathy and empathy are not necessarily mutually exclusive. One may feel empathy for someone, yet not sympathize with a decision made. One may feel both sympathy and empathy. And, sometimes, just pure empathy.

Which could be scary. We might have to make ourselves vulnerable to the point of going into another’s pain and being there with them —and it is scary to really think about being in the same situation. By signing this petition, it was a way of going beyond sympathy. It was potentially an expression of empathy — feeling the parents’ incredibly painful dilemma and on some level forging a connection to it.

To sign was a way of standing in the same place, and of making the same choice to go after this drug.

[dropcap]Do[/dropcap] I want to give legitimacy to Burzynski? No. Do I want to stand with this family in its suffering, to be truly vulnerably, to be nose b’ol im chaveiro? Yes.

A part of me says: Think and act in the short term. This family is fighting time. Help it try the last hope with Burzynski.

But then, in the long term, if the allegations against Burzynski are true, fight him tooth and nail. Make sure his clinic is closed down and his medical license is revoked — and, if appropriate, he is jailed.

So, there you have it — there is no wholly satisfactory response to the request to sign this petition. It makes no sense. But since when does anything about pure and innocent children suffering or, G-d forbid, dying, make sense anyway?

May Hashem grant Rephael Elisha Meir ben Devora a refuah shelemah.

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