Minnesota girl lives in a world with no pain
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By Amy Bowen, St. Cloud Times
BIG LAKE, Minn. (AP) - Dinnertime at the Gingras household is filled with the laughter of jokes and conversations about work and school.
On a cold, rainy night, Tricia and Stephen Gingras gather their daughters, Katie, 13, and Gabby, 9, around the dining room table. Their black Lab, Yooper, hovers underneath, just in case any of their dinner - salmon burgers, salad and macaroni and cheese - drops to the floor.
Amid the commotion, Tricia and Stephen blow on food to cool it before placing it on Gabby's plate. Something as simple as hot food is a challenge for Gabby, a bubbly and intelligent little girl who suffers from the rare condition, congenital insensitivity to pain with anhidrosis.
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Gabby cannot feel pain, making something as common as hot food dangerous. Numbers of those living with the disorder are difficult to find. Probably only a handful of cases such as Gabby exist in the world, said her pediatric neurologist, Dr. Stephen Smith of Gillette Children's Specialty Healthcare, St. Paul.
Most people think it would be a blessing not to feel pain, Tricia and Stephen said. But pain is a gift, they contend.
Pain is a fundamental defense for the body, said Dr. Sam Elghor, pain management specialist, Center for Pain Management, Sartell. People are born with the ability to feel pain, he said.
"Pain is a protection mechanism," Elghor said. "God gave us assistance so we can avoid harm. It's definitely a good thing."
During her 9 years, Gabby has sustained a broken jaw, eye scratches so severe she is now legally blind and countless broken and sprained bones.
Yet she has no concept of how badly her body is injured.
"I feel pressure," Gabby said. "Cracking my head open feels the same as when I bang it."
In addition, Gabby sweats very little. Doctors believe she only sweats 5-8 percent the amount of a normal person, her parents said. That makes it difficult to manage fevers. As a baby, they would put her in a cool bath and give her both children's Tylenol and Ibuprofen just to manage her body temperature.
Yet, she and her parents work to live normal, fulfilling lives. She's a straight-A fourth-grader. She loves to read. Gabby also adores animals, and wants nothing more than a kitten (but her mother has allergies).
Her parents have started the worldwide support group, A Gift of Pain, for those suffering from no pain. They have regular contact with 40 families from around the world.
"We're very happy where we are," Stephen said. "Six years ago, we couldn't imagine that we are here now."
Not much is known about Gabby's condition, Smith said. He has treated Gabby since she was a baby.
Her parents first noticed something was not normal when Gabby started teething. She bit into her fingers and tongue.
But she never cried.
For more than a year, the family desperately tried to discover what was wrong. They visited specialists at a long list of clinics and hospitals.
Finally, one physician pointed out her condition in a medical encyclopedia. It had one line and said not to worry about learning about the condition because it is so rare, Stephen said.
Doctors, specialists and Gabby's family learned about the condition together.
"You have to," Tricia said. "It's your baby."
Stephen suggested his daughter wear swim goggles when she was younger to protect her eyes from additional damage.
It saved Gabby's eyes, Tricia said.
Gabby didn't know how to jump properly as a young child, and would lock her knees. Someone gave her a little trampoline to practice jumping properly, Tricia said.
"If you don't know what hurts, how do you know that you need to bend your knees to absorb the shock?" Stephen asked.
The Gingrases also told Gabby's story to local and national media in hopes of finding families also dealing with no pain. They appeared on "20/20," "The Montel Williams Show," "Maury," "Oprah" and "Good Morning America."
The family has become strong advocates for Gabby, they said. They ask questions and research the condition.
Smith, the pediatrician, admires the family's dedication and devotion to Gabby.
"They have been truly phenomenal," he said. "They've been there for her. They support her."
Tricia and Stephen continue to look for ways to help their daughter, and something interesting happened.
They recently started Gabby on a gluten- free diet, after one of her doctors suggested it. Recently, Gabby landed wrong, and told her mother she didn't feel right.
They took her to a nurse, and she asked her how bad her leg hurt.
Tricia heard her daughter say: "I've never felt pain before, but I think it's a six."
What did Gabby feel? Could it be a result of the new diet?
Her parents don't know, but the idea that she felt something is encouraging.
Gabby might have regained some ability to feel or perceive pain or temperature, Smith said. He said he believes it started about two years ago.
"That is a very exciting thing," Smith said. "It gives her something to go on."
Regardless of whether Gabby regains some feeling, she will grow up and lead a great life. Her parents said they will do everything possible to ensure that.
They point to a member of their nonprofit group - she's an adult with two children.
That might be Gabby one day.
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Information from: St. Cloud Times
(Copyright 2010 by The Associated Press. All Rights Reserved.)
