Honoring RBG

Today on Facebook I’d like to publish a fundraiser to honor the memory of Ruth Bader Ginsburg. There are many charities that you can choose to do this, but I’m suggesting that this one has special meaning in several aspects of RBG’s life: The National Tay-Sachs and Allied Disease Foundation (NTSAD).

Tay-Sachs disease is a 100% fatal disease that is concentrated in two populations, Jews of Eastern European ancestry like RBG, and the Cajuns of Canada and Louisiana. TS does occur more generally, but those two groups see it the most often.

Tay-Sachs disease is a nightmare. Because it is rare, physicians do not generally test pregnant women for it, and even in the main populations where it is more common, it is often not detected until late in a pregnancy. If a child is born with it, that child is doomed to a maximum of 4 years of life. Every day of that life will be filled with pain. The child will often scream in agony for hours on end, and the signs of their discomfort never stop. There is no possibility of anything resembling a normal childhood, or a normal life for the family.

Tay-Sachs disease also has terrible social consequences. Parents who cannot afford round-the-clock nursing care have to do it themselves. Over half the parents with a Tay-Sachs child wind up in divorce proceedings. You might be able to imagine what this might mean for the other children of those marriages.

I have a personal connection to Tay-Sachs: I am a carrier of the gene. The disease occurs when both parents are carriers and a child is born with a double dose of the gene. If one parent has the gene, they can pass the gene to a child, but the child then becomes a carrier rather than a victim. Even if both parents have the gene, there is just a 25% chance that a child will actually develop it. My grandmother lost the lottery. She bore 6 children in the WW1 era Europe, and 3 of them died before age 2. When I asked my father and one surviving aunt what killed them, all they would say is that they died of a horrible disease. Although it is not possible to say with certainty that this was Tay-Sachs because this preceded genetic testing, given that we are carriers and the family had decent economic status (so there was no malnutrition at that point), TS is a reasonable surmise.

There is another connection to Ruth Bader Ginsberg here. Tay-Sachs disease is one of the conditions that makes it imperative to preserve Roe v. Wade. Parents should have a choice about whether to bring a Tay-Sachs baby into the world. As I watch various states pass anti-choice bills, I look at their provisions to see what would happen if parents discover they have a Tay-Sachs fetus in the 3rd trimester. As of yet, I haven’t seen a single one of these bills that would allow a termination under these circumstances. Some of those bills allow for termination for rape or incest, but not a one to spare parents from a child’s agony, family bankruptcy and divorce.

And please understand that while Cajuns and Ashkenazi Jews suffer disproportionately from this scourge, it (and similar genetic disorders) can and does hit everyone.

[This article was posted as a Facebook fundraiser.]

Please consider a donation to this wonderful organization today. When Facebook tells me that the donation period has concluded, I’ll try to make sure the Foundation knows that it was in honor of Ruth Bader Ginsberg. And Terri and I will start the ball rolling with a $75 contribution.

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