JulieLeung.com: a life told in tidepools

Brian Chin at the Seattle P-I Buzzworthy blog linked to the story of a 5-year-old girl who has a rare genetic disorder.

Girl with rare disease doesn’t know pain:

In the school cafeteria, teachers put ice in 5-year-old Ashlyn’s chili. If her lunch is scalding hot, she’ll gulp it down anyway.

On the playground, a teacher’s aide watches Ashlyn from within 15 feet, keeping her off the jungle gym and giving chase when she runs. If she takes a hard fall, Ashlyn won’t cry.

Ashlyn is among a tiny number of people in the world known to have congenital insensitivity to pain with anhidrosis, or CIPA – a rare genetic disorder that makes her unable to feel pain.

“Some people would say that’s a good thing. But no, it’s not,” says Tara Blocker, Ashlyn’s mother. “Pain’s there for a reason. It lets your body know something’s wrong and it needs to be fixed. I’d give anything for her to feel pain.”

[…]

Many things they couldn’t anticipate. Ashlyn’s baby teeth posed big problems. She would chew her lips bloody in her sleep, bite through her tongue while eating, and once even stuck a finger in her mouth and stripped flesh from it.

Family photos reveal a series of these self-inflicted injuries. One picture shows Ashlyn in her Christmas dress, hair neatly coifed, with a swollen lip, missing teeth, puffy eye and athletic tape wrapped around her hands to protect them. She smiles like a little boxer who won a prize bout.

Reading this piece, I feel sad for the girl and her family, for what they have suffered. It’s hard enough for me to take my daughter to the hospital. But I also begin to see a bit more of the purpose of pain. Imagine life without it.