PATTERSON, Ga. – Ashlyn Blocker's parents and kindergarten teachers all describe her the same way: fearless. So they nervously watch her plunge full-tilt into a childhood deprived of natural alarms.
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."
The disease also makes Ashlyn incapable of sensing extreme temperatures – hot or cold – disabling her body's ability to cool itself by sweating. Otherwise, her senses are normal.
That's because the genetic mutation that causes CIPA only disrupts the development of the small nerve fibers that carry sensations of pain, heat and cold to the brain.
"There are all kinds of different nerve cells that help us feel different sensations," says Dr. Felicia Axelrod, a professor of pediatrics and neurology at New York University School of Medicine. "You can have one sense removed, just like you can lose your hearing but still smell things."
Specialists such as Axelrod don't know how many people suffer from CIPA. As director of a treatment center that specializes in CIPA and related disorders, Axelrod has 35 patients with the disease on file. Only 17 of them are from the United States. Japan has the world's only association for CIPA patients. It has 67 members.
In Patterson, a rural town of 800 people in southeast Georgia, John and Tara Blocker had no idea the disorder existed before they took Ashlyn to the doctor for a bloodshot, swollen left eye when she was 8 months old.
The doctor put drops in Ashlyn's eye to stain particles that might be irritating it. The infant smiled and bounced in her mother's lap while the dye revealed a massive scratch across her cornea.
"They put the dye in her eye, and I remember the look of puzzlement on all their faces," Ashlyn's mother says. "She was not fazed by it by any means."
Tests led to Ashlyn's diagnosis. To have the disorder, Ashlyn had to inherit two copies of the mutated gene – one from each parent.
Ashlyn's father, a telephone technician, and mother, who holds a degree in physical education, were largely on their own in learning to cope with their daughter's indifference to injury.
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.
Her first serious injury came at age 3, when she laid her hand on a hot pressure washer. Ashlyn's mother found her staring at her red, blistered palm.
"That was a real reality check for me. At that point I realized we're not going to be able to stop all the bad stuff," Tara Blocker says. "She needs a normal life, with limitations."
Infections with no outward symptoms also concern them. They heard of a case where a child with CIPA had appendicitis that went untreated until her appendix burst.
"It opens your eyes to things you wouldn't normally think about," Tara Blocker says. "If she sees blood, she knows to stop. There's only so much you can tell a 5-year-old."