www.kare11.com/news/news-article.asp?NEWS_ID=60120
Gabby Gingras has a disease so rare shes the only person her parents and doctors can find in the United States suffering from it. Like any other three-year-old, Gabby takes her share of slips and falls. For no matter how hard Gabby hits the ground, she will not shed a single tear. She fell down the stairs the other day in the garage, her dad says. She just picked herself up and started climbing up the stairs again like nothing had happened. Gabby was born with a genetic defect called Hereditary Sensory and Autonomic Neuropathy Type-5. It is so rare her doctors dont know of another person with it in this country. Research done for her parents turned up a dozen known cases in the world. There are no support groups, there are no Web sites, there are not parents who can tell us what we might expect. It was the last thing Trish and Steve Gingras expected when Gabby became a little sister to their daughter Katie three years ago. But something didnt seem right when their little baby kept scratching her face. She was severely gnawing on her hands, when the teeth come through even a little bit biting, biting, biting, so they looked like raw hamburger, Trish says. They were the first puzzling symptoms of Gabbys disorder later diagnosed by neurologist Stephen Smith of Gillette Childrens Specialty Healthcare. Little tiny nerve fibers, the smallest of the nerve fibers, that are supposed to record pain, send that signal to the brain, so you can interpret what it is. Didnt hurt her at all getting a tooth ripped out, Steve Gingras says. The teeth she didnt break off while biting toys were removed by an oral surgeon after Gabby chewed up her mouth and tongue so badly she had to be hospitalized. She scratched them so severely, that at one point doctors sewed them shut to keep her fingers out. Last week Gabbys family was at Fairview University Medical Center to discuss the removal of her left eye, now swollen and blind from glaucoma brought on by the scratching. The vision in Gabbys scratched right eye, her good eye, has been measured at 20-300.
We wish wed have thought of the idea a little bit sooner for the goggles, Trish says. They provide a layer of protection that is quite possibly the only reason Gabby can see her beloved princesses her dolls and the characters in movies at all anymore. The goggles are part of Gabbys wardrobe wherever she goes, including pre-school in Monticello where Gabby has been assigned a paraprofessional who makes sure she doesnt get hurt. Gabby broke her jaw a year ago and no one knew it for more than a month. Last fall, she snuck out of bed, stood in front of a hot steam humidifier and suffered second-degree burns. But if Gabby was cursed by genetics, she was blessed with some wonderful tools for coping. Witness a conversation between Gabby and her mom when the child is caught on the family couch with a beverage. Ill have to take your milk, because were not supposed to have chocolate milk in the living room right? Shes got attitude and I think that will serve her well, Trish says. She needs a little bit of attitude, Gabbys attitude and spirit win over everyone she meets. Earlier this month she was crowned Princess for a Day at a royalty brunch in Becker. Gabbys parents have no idea whats ahead for their daughter but they are determined the girl who cant feel pain will know what it feels like to be happy.
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