Don't Sick Babies Deserve Experimental Treatment to Keep Them Alive?

Seth BenjaminParents will do anything for their kids. Anything. And you might as well get the tissues now before I tell you the story of a family in Indiana desperately trying to raise money to get their sick 5-month-old son an experimental treatment. If they do nothing, he’ll be dead by age 2.

Go on. Get tissues and come back. I'll wait.

Seth Benjamin Petreikis, born July 21, 2010, has a rare, fatal disease called Complete DiGeorge Syndrome. The family found a Lorenzo’s Oil-style treatment that just might work – a thymus tissue transplant – but it was rejected by Medicaid.
Wait a minute. Didn’t we just vote down Obama’s health care plan because of supposed “death panels?”


I can’t even look at the pictures of this gorgeous kid, born just weeks before my daughter Abby, without crying. Having spent six weeks in the NICU with a delicate baby, and watched other parents and babies mysteriously disappear without a word of explanation (nurses are not allowed to break other patients’ confidentiality), I am, perhaps, particularly sensitive to the issue of babies needing care.
I am so lucky we got all the care we needed. I am so lucky that we were insured, that we were both laid off from our jobs after her birth, that we had the help we needed to keep paying for COBRA, that those COBRA costs were reduced by the stimulus plan. If I had to helplessly watch my baby wither and fade, and I knew there was a possible treatment, but that I couldn’t have it while others could? I think I’d go nuts.
Seth’s parents have taken to the internet to raise the $500,000 needed to possibly keep their kid alive. If the surgery ends up being covered or costs less, they have pledged to use that money to get thymus tissue transplants approved for the future.
I know this isn’t the only family going through this. I can see that thymus tissue transplant might not work. But here they are, and I can’t resist giving them a chance at saving their kid’s life.
And I hope people see that “death panels” happen anyway – whether you’re covered by private insurance or public assistance, someone has to say “yes” or “no” to treatment. This family deserves a “yes.” We all do. So if you think thinking that’s only something “Obamacare” would do, here’s your wakeup call: Obama’s plan was voted down, yet this kid gets a death sentence. Now, let’s work together to get decent healthcare for everyone.
Happy holidays, Seth. Hope to see you next year.

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