This month’s Advocate has a story about Torey Harrah, a 17-year-old girl with Apert syndrome, which means she was born with all of the bones in her skull already fused, among other complications. She is the star of a documentary called “Torey’s Distraction”, which tells the story of her rare genetic craniofacial abnormality, her face-changing surgery and her life as a loner in a judgmental world.
I don’t know if this will come across to our readers, but it was a difficult story to write. I agonized over descriptions of Torey’s appearance, her face, her hands, the way she talks and moves. In the end, I left them all out. Our photo editor, Can Türkyilmaz, took a terrific picture of her. Here are his 1,000 words.
Because of space constraints, we had to leave out a lot of good stuff, such as this bit of irony: Torey’s two younger brothers are beautiful boys who work as professional models.
[youtube]http://www.youtube.com/watch?v=li8lLQUDkx8[/youtube]I didn’t mention the intense anxiety that comes across Torey when asked about her 56 major surgeries. Last year, she got so upset before a cranial surgery that she started throwing up, and the anesthesiologist called it off.
Another telling detail is that Torey’s braces cost $18,000. But that’s small change compared to the medical bills Torey has racked up since birth. We could write a whole other story just about the Harrah family’s battles with health insurers and Medicaid. Her parents filed bankruptcy a few years ago because of medical bills.
And that brings me to the darkest part of this story. There is some controversy about Apert syndrome babies and whether doctors should do anything to help them. To live, they need surgeries from the time they’re born until the time they stop growing. They are complicated, expensive, painful surgeries. And there are some who think it’s better to let them be, to leave them to die. I’m not well informed on the topic, but I can say with conviction that even though her life is hard, Torey enjoys it. And the world is more beautiful with her in it.
