Life full of danger for little girl who can't feel pain
By Keith Oppenheim
CNN's Keith Oppenheim with 5-year-old Gabby Gingras who doesn't have the ability to feel pain.
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BIG LAKE, Minnesota (CNN) -- On this assignment, I would spend most of my reporting day in kindergarten.
When I arrived with my crew at Liberty Elementary School in Big Lake, Minnesota, it didn't take long to figure out which child I was there to see -- she was the 5-year-old wearing a pink shirt, blue jeans and safety glasses.
Her name is Gabby Gingras, a little girl who's determined to be just like everyone else. But unlike other children, Gabby does not feel pain.
She has a disorder known as CIPA -- congenital insensitivity to pain with anhidrosis. Although she can feel touch, her brain doesn't receive signals that she's experiencing pain, and she hardly sweats. If Gabby broke her leg, or put her hand on a hot plate, or if her body was overheating, she wouldn't know.
It is an extremely dangerous condition, and very rare. Gabby's doctor, Dr. Peter Dyck at the Mayo Clinic, in Rochester, Minnesota, estimates there are only 100 documented cases of CIPA in the world.
"Not being able to feel pain is a terrible disadvantage," Dyck said.
Before I would have a chance to talk to Gabby about any of that, we had to go to gym class. The kids played a game of "tower tag." At one point, she got clocked by another kid who was speeding across the gym floor.
I asked her: "If you fall and got hurt, what does that feel like?"
"It feels like you want to cry but you can't. So you have to go to the nurse," Gabby answered.
She was checked by the nurse, but that didn't slow her down. Once back in the gym, she was flying. Later, I said, "You were good." "I was really fast!" she answered. And fearless.
But it's easier to be fearless when you're 5. Tougher when you're a parent.
Steve and Trish Gingras first noticed something was wrong when Gabby was 4 months old. She was biting her fingers until they bled. By the time she was 2, her teeth had to be removed so she wouldn't hurt herself. Now, she must eat very small bites of soft food -- and like everything else she does, she eats with gusto.
But biting her fingers wasn't the only danger.
When she was a toddler, Gabby scratched her cornea and was given eye gel, the standard prescription. Because her doctors and parents were unaccustomed to treating a child who doesn't feel pain, no one anticipated what would happen next.
"The thick gel had a reflux reaction to rub your eye," Steve said. "When you don't feel pain, you don't know how hard you're rubbing, and pretty soon she had damaged both eyes."
The Gingrases tried something else -- safety goggles. But the damage was done. One eye was so infected it had to be removed; otherwise her other eye might've become infected too. Gabby got a prosthetic eye, and the sight in her remaining eye is dim.
In school, Gabby is always being followed by an education assistant, to clear her path, to give her eyedrops, to make sure she's not seriously injured. She works with a closed-circuit TV monitor that helps magnify images in the classroom, and also helps with reading. Although Gabby is learning to manage, and getting a lot of help, she still could hurt herself. She can't see well, and doesn't have pain to tell her when she's in trouble.
Later, at their home, Gabby's parents showed me the Web site they've created. It's www.gift-of-pain.org, a communication network they launched for families of children with CIPA. They share information with other parents, many of whom are experiencing the helplessness they went through.
"It used to be just Steve and I together in this," Trish said. "Now we've got some amazing people. We can pick up the phone and say 'We need a little shoulder to cry on. We need a little advice. What do you think?' And sometimes, that makes all the difference in the world."
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