One of Sarah's first-grade classmates earlier this year was a boy named AJ in a recumbent wheelchair. We didn't know what was wrong with him but he seemed pretty immobile and unresponsive, so I assumed he had severe cerebral palsy or some such thing. He had a personal assistant who wheeled him in each morning and helped in the classroom. Another parent in Sarah's class organized a schedule where families could take turns bringing dinners to his house, since his mom was taking care of AJ alone – more than a full-time job – and she had two other young kids. So I made a pan of lasagna and Sarah and I brought it over (right around the corner from our house) between Christmas and New Year's. The mom seemed tired. I could glimpse AJ through the hall lying on a couch with some kind of machine to help him breathe. In calling to confirm arrangements, the mother who organized the dinners said that AJ wouldn't be coming back to school after the holidays.
Yesterday, the school's parents got word that he had died.
Back in December, I asked the woman who organized the dinner brigade what exactly was wrong with AJ and she said it was adrenoleukodystrophy. I did some quick research on the web and was was shocked to realize that this boy had been running around, talking and laughing only a year or two ago. It's a genetic disorder that first shows up in boys (about 1 in 17,000) between the ages of 4 and 10 and progresses rapidly to a vegetative state and usually death within a few years. There was a movie called Lorenzo's Oil about a boy with this condition.
Then today there was a follow-up e-mail from the school about AJ's funeral and some other words of comfort, plus a link for people to make donations. A section of the ALD Foundation web site spotlights AJ. I checked it out and found that his two brothers have also tested positive for the disease. I cannot even imagine what the mom and these two other boys are going through – and have been going through.
This is the drawback to having kids – every time you hear about some disease or accident happening to a child, you immediately picture it happening to your own children. Somehow, realizing that AJ had been perfectly fine until rather recently made me much, much sadder. The idea of Sarah or Becky changing from their wonderful, active, happy selves into someone like AJ is really heart-breaking. Especially when I asked Sarah in the fall if the kids and AJ were able to talk to each other and she said no, he couldn't talk, but she sometimes patted his leg to make him feel better because he cried sometimes. God.
So anyway, I'll be making a donation. It really does hit home when you know someone with Disease X that needs your contributions to fight. My extended family has been pretty lucky, medically speaking – one fatal car accident (a cousin) and an uncle who died of leukemia in his early 30s before they'd invented bone marrow transplants. There are so many conditions for which the medical establishment can do pretty much zilch in terms of a cure, despite all sorts of tests and treatments. Sarah's first question last night when we talked about AJ was "Why didn't he just go to a hospital?" I think she was taken aback to hear that he had in fact been to doctors and hospitals quite a lot, but there are some things doctors simply can't fix. And imagine if AJ was born in a Third World country. No hospitals, breathing machines or motorized wheelchairs for him.
I think the U.S. medical establishment tends to focuses on tests and treatments of sometimes questionable effectiveness at the expense of good hospice care and pain relief. I'm not talking about AJ in particular, though I was happy to see the web site mentioned he was getting in-home hospice care. But even if hospice care was well-known and available for free to all, I guess the basic human emotion of hope even against overwhelming odds will still result in clearly terminal patients dying all hooked up to tubes in hospitals in pain with their butts hanging out of their johnnies, fingers still curled in rigor mortis around the nurse call button. Unfortunately hospice means "giving up" and "accepting the inevitability of death pretty soon" and that's a hard change in attitude to make, especially in a country where miraculous medical feats are commonplace (at least if you believe the TV) and hospitals have all sorts of cool high-tech equipment and tests and even purple latex-free gloves. That you can make into balloon animals after the doctor takes a bead out of your daughter's nose (but you still need a low-tech Sharpie).