Medical Mystery: A World Without Pain

Feb. 22, 2008 — -- In many ways, Gabby Gingras is a typical 7-year-old girl. She goes to gym class with other second-graders, loves playing board games, and idolizes her older sister Katie.

But at school she's always accompanied by a teacher's aide who monitors her every move. She wears a helmet and goggles every day. Gabby's life is dangerous in ways other kids cannot understand: She doesn't feel pain, and is at constant risk of badly injuring herself.

When Gabby was four, she participated in a documentary called "A Life Without Pain." In the video she banged her head into the sharp corner of a table, but she just kept on going. Later,a dog collided with her, but Gabby remained unfazed.

For the first four months of her life, Gabby was the perfect little baby. It wasn't until she started teething that her parents, Steve and Trish, noticed some odd behavior.

"I was massaging Gabby's gums one day, and she bit down on me ungodly hard. It was so hard, I couldn't stand it," Steve said. "When I pulled my finger out, I pulled a tooth out of her mouth — and she's just happy playing like nothing happened."

It was as if she didn't even feel it. And that was just the beginning. The four-month-old would teethe on anything — plastic toys, hardcover books, even her own fingers, until they were bloody.

"She had damaged them so badly it really looked like raw hamburger," Trish said. "It was that chewed up and mangled."

"She would also chew on her tongue like it was bubblegum," Steve said.

It was bizarre and frightening. Steve and Trish brought Gabby to doctor after doctor. For months, specialists tested the baby for everything, from metabolic diseases to rare genetic disorders — and ruled out one disease after another. At 7 months, the Gingrases were no closer to an answer.

Trish became so frustrated she spent an entire weekend searching the Internet for answers. Suddenly, she found some pictures of kids with fingers that looked like Gabby's.

"That was the first time we'd heard the term 'hereditary sensory autonomic neuropathy,'" Steve said.

HSAN is an extremely rare genetic disorder that affects the sensory nerves. In Gabby, the nerve fibers that detect pain and temperature never developed. There is no cure.

Dr. Felicia Axelrod, one of the foremost experts in the field, said the most profound abnormality is that Gabby cannot feel pain.

"She could break a leg, she could scratch her eye, and not even be aware of it," Axelrod said.