Originally published at Danielabraham.com. You can comment here or there.
I’m about to break a rule.
So yesterday, I spent part of my day working up a draft press release for something called Help Rachel Breathe. I don’t know Rachel or Steven Phillips. They’re religious, I’m not. She’s a former professional ballerina, I’m essentially dance-blind. There are a lot of people in the world who are in trouble. But much as I chose not to care about Charlie Sheen, I’ve chosen to care about Rachel.
I don’t talk about my family on this blog. I don’t talk about my personal life. It’s a boundaries thing, and it’s a rule I feel comfortable with most of the time. I’m making an exception here. The thing that’s killing Rachel is called Ehlers-Danlos Syndrome. It’s a problem with how her body builds connective tissue, and because of the way it’s expressing in her, her trachea’s collapsing. There are a bunch of other ways that Ehlers-Danlos can present. Some folks, their joints spontaneously dislocate. Some folks scar badly from even very minor injuries. Some people, their heart valves blow out.
For my wife, it presented as a particularly vicious gastric problem. Basically, the bits of her esophagus that keep the food and acid in your gut didn’t work so well. If she got a bad cough, it forced stomach acid out onto her vocal cords, which made her cough, and before long we were in the ER. After the Darling Child showed up, things got worse. For about a year and a half, my wife couldn’t eat without feeling profoundly ill. She couldn’t eat breakfast or lunch because she’d be too sick to work, so she made it through the day on a witch’s brew of Ensure, esspresso, chocolate syrup and ice, then came home for a small, healthy meal and sat on the couch in misery until bedtime. She dropped almost 40 pounds that she didn’t have to lose. The gastroenterologists at the hospital where she works misdiagnosed what was going on — we didn’t know then that Ehlers-Danlos runs in her family. We wound up at the Mayo Clinic in Rochester, Minnesota, where a doctor named Michael Camilleri essentially saved her. But for about a year, I was watching my three-year-old daughter watch her mother starve to death, and I couldn’t stop it. It’s possible that my kid has it too. If she does, we don’t have any way to know how it’ll present in her.
Ehlers-Danlos and things like it aren’t fatal. That’s a fiction. Rachel isn’t dying of Ehlers-Danlos, she’s dying of a collapsed trachea. My wife wouldn’t have died of Ehlers-Danlos. She’d have died of some other thing brought on by malnutrition. But we got lucky.
Honestly, I don’t make Rachel’s chances as great. The surgery she’s looking at has been done 11 times before, with ten successes and one that died from complications. That’s actually pretty good odds. But she can’t get it done in the US because it involves harvesting her own stem cells, and we don’t do that here. Insurance also won’t help with it. Getting her to Sweden and getting the money to cover it look bad to me unless someone with really deep pockets is moved to write a really big check or thousands of people decide it’s a better use of $10 than the morning latte and muffin. I’m doing what I can. A lot of other folks are taking on the burden. We’re trying. There’s not a lot of time, and it is a lot of money.
But she may get lucky too. I hope she does.
If you feel the urge, go read about what Rachel’s up against. Throw a couple bucks her way if you’ve got ‘em to spare. Tell your friends about it. Tweet, post, talk about it over coffee at the office. Whatever.
If you don’t, I get that too. There’s a lot of tragedy in the world, and we could all bankrupt ourselves trying to fix it. We all have to pick our battles, and if this isn’t yours, it isn’t yours.
It is mine, though. Doomed or not.