The Boy in the Moon
December 4, 2007 10:19 AM   Subscribe

The Boy in the Moon: Ian Brown writes about the living with his son Walker, who was born with a rare and serious genetic disorder called Cardiofaciocutaneous syndrome, or CFC. The first part of a three-part feature is available, and includes pictures and video.
posted by atayah (16 comments total) 16 users marked this as a favorite
posted by psmealey at 10:39 AM on December 4, 2007

Oh geez. Needs a "Will make you sob piteously" tag.

Such good writing, so sad. So tender.
posted by thehmsbeagle at 11:04 AM on December 4, 2007

Really bad acronym. When I think of CFC I think of carbon flourides (Freon) I don't think of a disease. Sure it's a horrible disease, but doesn't make as cool a band name as Fragile X.
posted by Gungho at 11:14 AM on December 4, 2007

Good piece.
posted by Alvy Ampersand at 11:31 AM on December 4, 2007

Oh geez. Needs a "Will make you sob piteously" tag.

Seconded. I got about a page and a half into it on Saturday and had to stop. I'll try again next weekend maybe. Brown's a hell of a writer, and a really decent and incredibly fun and easygoing guy to boot.
posted by gompa at 12:21 PM on December 4, 2007

I really gotta feel for the writer, his family and his son...but at what point are we benefiting anyone with the extraordinary efforts we go to in keeping alive those who cannot possibly live without that extraordinary care.

I don't want to debate the horrors of unchecked eugenics, yet there needs to be a limit of what's acceptable for the greater good. Would a few million dollars be better spent taking care of a specific individual, or treating a disease affecting thousands? (which is a question not at all specific to this case)
posted by Kickstart70 at 12:53 PM on December 4, 2007

Kickstart, if the problem is not diagnosed in the womb, there's not much you can really do but provide care, at least in a civilized society.

Me, I'm sticking with dogs. Yeesh.
posted by M.C. Lo-Carb! at 1:09 PM on December 4, 2007 [1 favorite]

Another emotional story about a child with CFC and his parents having to come to terms with the inevitability and imminence of his early death.

If you have the time, I recommend watching this entire documentary, but this segment alone is very worthwhile
posted by briank at 1:18 PM on December 4, 2007

Wow. Really sad. Just gave my baby a big squeeze and thanked the heavens for his good health. Ian Brown writes so movingly about such a tough subject.
posted by Kangaroo at 2:00 PM on December 4, 2007

For those who don't get the Globe, this article was essentially an entire section of the Saturday paper. An amazing article in my mind simply because he managed to write it so clearly while at the same time being absolutely in the dead centre of it.
posted by GuyZero at 2:41 PM on December 4, 2007

Good post, but I think it would have been better to wait two weeks and be able to link to the whole series. As it is, people will forget to go back to it and another post will count as a double.
posted by Dasein at 4:08 PM on December 4, 2007

Ah, god, that's a heart-wrenching story. I'd heard Ian Brown on his entertaining Talking Books gig (CBC radio), where he comes across as witty, abundantly literate, and slightly dissolute. I'd love to ask him why he decided to write this.
posted by YamwotIam at 7:30 PM on December 4, 2007

briank: I saw that doc on my PBS station a week or so ago, and I have to agree, that segment was just gut-wrenching, especially when the boy's mother described the moment of his death.

Reading the Globe piece now, there have been about ten different places where I had to hold back from bursting right into tears, and I haven't even finished Part 1.
posted by brain cloud at 9:38 PM on December 4, 2007

needs a "makes you want to rush to your kids and hug them" tag
posted by athenian at 11:52 PM on December 4, 2007

Where is the article? All I see is Flash.
posted by gum at 2:55 PM on December 5, 2007

gum: You have to select 'watch the movie', and then they have three links along the bottom of the 'movie', to the parts of the story, which are actually articles. Awful UI.
posted by jacalata at 4:05 AM on December 6, 2007

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