In my family, it was Cystic Fibrosis--among other things.
Before I was born, a brother and a sister died as infants. They weren't diagnosed with CF. My sister, Loa Elizabeth died of peritonitis when she was only days old.
But my little brother had CF. He was very bright and very, very fragile. He loved to go to school, but it was difficult for him to sit up-right at a desk. His favorite game was pretending to fish with a stick and a piece of string.
By the time I became a high school teacher, science had advanced enough that I had a student with CF. He was very bright and, despite the skater swagger, very fragile.
Science certainly progressed during the years between my little brother's death and my student's life. My student was eligible for experimental trials that hadn't even been imagined when my brother died.
You can learn more about cystic fibrosis here.
Addendum: The world lost Eli.
I used to babysit for a little boy with cystic fibrosis, and the hardest thing was knowing that he would not live past a certain age. We all just ignored it -- you had to -- but it wasn't easy to treat him the same as his siblings. A good friend of mine had a brother with CF who made it into his young 30s.
ReplyDeleteIn my family, we've got a couple of killer diseases too, plus the capacity to take religion a little too far. I wonder if there's anyone who wins in the genetic sweepstakes? I'm guessing such people are few and far between.
Mary: I think you are right about the genetic lottery. I can't say I've ever met any straight-up winners.
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