The Girl Who Doesn't Feel Pain.
<div class="IPBDescription">Good thing I can feel pain.</div> <a href='http://www.kare11.com/news/news-article.asp?NEWS_ID=60120' target='_blank'>http://www.kare11.com/news/news-article.asp?NEWS_ID=60120</a>
In tradition:
<!--QuoteBegin--></div><table border='0' align='center' width='95%' cellpadding='3' cellspacing='1'><tr><td><b>QUOTE</b> </td></tr><tr><td id='QUOTE'><!--QuoteEBegin-->Gabby Gingras has a disease so rare she's the only person her parents and doctors can find in the U.S. suffering from it. Like any other three-year-old, Gabby takes her share of slips and falls. Her reaction to each is predictable — at least for her family.
For no matter how hard Gabby hits the ground, she will not shed a single tear. Hard as it is to fathom Gabby Gingras feels no pain. There is no cure, nor will she outgrow it.
"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."
"She never cried," her mother adds.
Gabby was born with a genetic defect called "Hereditary Sensory and Autonomic Neuropathy Type-5. It is so rare her doctors don't know of another person with it in this country. Research done for her parents turned up a dozen known cases in the world.
"A dozen in the world," Trish Gingras says. "There are no support groups, there are no Web sites, there are not parents who can tell us what we might expect. Nothing."
It was the last thing Trish and Steve Gingras expected when Gabby became a little sister to their daughter Katie three years ago.
"Oh, she was the sweetest little baby," Trish says.
But something didn't seem right when their little baby kept scratching her face. Things got worse when Gabby started teething.
"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 Gabby's disorder later diagnosed by neurologist Stephen Smith of Gillette Children's 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. Those fibers are not working," Smith says.
So often we think of pain in a negative way. But it is pain, that protects us.
Because Gabby feels no pain, she no longer has any teeth.
"Didn't hurt her at all getting a tooth ripped out," Steve Gingras says.
The teeth she didn't 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.
"Pain is the protective mechanism, and she doesn't have that," Dr. Smith says.
Gabby didn't have pain to save her eyes either. She scratched them so severely, that at one point doctors sewed them shut to keep her fingers out. But, the damage was already done.
Last week Gabby's 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 Gabby's scratched right eye, her good eye, has been measured at 20-300.
"There are days where you look at (baby) pictures and you see those bright eyes ... and you wish you knew then what you know now. We wish we'd have thought of the idea a little bit sooner for the goggles," Trish says.
The swim goggles she wears around the clock were her dad's idea. 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.
"She is awesome about wearing them. They're just part of her," Trish says.
The goggles are part of Gabby's wardrobe wherever she goes, including pre-school in Monticello where Gabby has been assigned a paraprofessional who makes sure she doesn't get hurt.
Caution seems justified. 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.
"She never felt the pain of the burn," Trish says.
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."
"I'll have to take your milk, because we're not supposed to have chocolate milk in the living room right?"
"Too late now," Gabby teases.
"She's got attitude and I think that will serve her well," Trish says. "She needs a little bit of attitude,"
Gabby's attitude and spirit win over everyone she meets. Earlier this month she was crowned Princess for a Day at a royalty brunch in Becker.
Gabby's parents have no idea what's ahead for their daughter — but they are determined the girl who can't feel pain will know what it feels like to be happy.
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In tradition:
<!--QuoteBegin--></div><table border='0' align='center' width='95%' cellpadding='3' cellspacing='1'><tr><td><b>QUOTE</b> </td></tr><tr><td id='QUOTE'><!--QuoteEBegin-->Gabby Gingras has a disease so rare she's the only person her parents and doctors can find in the U.S. suffering from it. Like any other three-year-old, Gabby takes her share of slips and falls. Her reaction to each is predictable — at least for her family.
For no matter how hard Gabby hits the ground, she will not shed a single tear. Hard as it is to fathom Gabby Gingras feels no pain. There is no cure, nor will she outgrow it.
"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."
"She never cried," her mother adds.
Gabby was born with a genetic defect called "Hereditary Sensory and Autonomic Neuropathy Type-5. It is so rare her doctors don't know of another person with it in this country. Research done for her parents turned up a dozen known cases in the world.
"A dozen in the world," Trish Gingras says. "There are no support groups, there are no Web sites, there are not parents who can tell us what we might expect. Nothing."
It was the last thing Trish and Steve Gingras expected when Gabby became a little sister to their daughter Katie three years ago.
"Oh, she was the sweetest little baby," Trish says.
But something didn't seem right when their little baby kept scratching her face. Things got worse when Gabby started teething.
"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 Gabby's disorder later diagnosed by neurologist Stephen Smith of Gillette Children's 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. Those fibers are not working," Smith says.
So often we think of pain in a negative way. But it is pain, that protects us.
Because Gabby feels no pain, she no longer has any teeth.
"Didn't hurt her at all getting a tooth ripped out," Steve Gingras says.
The teeth she didn't 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.
"Pain is the protective mechanism, and she doesn't have that," Dr. Smith says.
Gabby didn't have pain to save her eyes either. She scratched them so severely, that at one point doctors sewed them shut to keep her fingers out. But, the damage was already done.
Last week Gabby's 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 Gabby's scratched right eye, her good eye, has been measured at 20-300.
"There are days where you look at (baby) pictures and you see those bright eyes ... and you wish you knew then what you know now. We wish we'd have thought of the idea a little bit sooner for the goggles," Trish says.
The swim goggles she wears around the clock were her dad's idea. 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.
"She is awesome about wearing them. They're just part of her," Trish says.
The goggles are part of Gabby's wardrobe wherever she goes, including pre-school in Monticello where Gabby has been assigned a paraprofessional who makes sure she doesn't get hurt.
Caution seems justified. 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.
"She never felt the pain of the burn," Trish says.
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."
"I'll have to take your milk, because we're not supposed to have chocolate milk in the living room right?"
"Too late now," Gabby teases.
"She's got attitude and I think that will serve her well," Trish says. "She needs a little bit of attitude,"
Gabby's attitude and spirit win over everyone she meets. Earlier this month she was crowned Princess for a Day at a royalty brunch in Becker.
Gabby's parents have no idea what's ahead for their daughter — but they are determined the girl who can't feel pain will know what it feels like to be happy.
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This discussion has been closed.
Comments
What are you talking about, bad parenting? She tore out her teeth and chewed up her hands before she could communicate anything, that's bad parenting to you?
poor girl.
today is one of those depressothon days in O/T.
my mistake*, they're quite possibly the best** parents ever.
*are you high?
**worst
That is the most disgusting thing I've seen someone say on these forums. Congratulations.
my mistake*, they're quite possibly the best** parents ever.
[...]
*are you high?
**worst <!--QuoteEnd--></td></tr></table><div class='postcolor'><!--QuoteEEnd-->
alright, best parent ever. i'm taking a bite.
do you believe that they can keep their daughter from moving, from performing simple actions, at <i>all times</i>? the correct answer is, no, they can't.
unless they take her everywhere, tied-up, into the bathroom, into the kitchen, into bed, etc.
would you do that if you were a parent? no! you'd make the kid miserable!!
now that's assuming you KNEW about the disorder.
moreover, they did NOT know of the disorder (which, i might add, has 12 other recorded instances in the world??) . if your kid is happily chewing away on a toy, are you gonna rip it out of his hand? i sure as hell hope not. not many parents are gonna do that unless they find out he has this same unfortunate disorder. what if your kid has his fingers in his mouth? are you going to take a <i>baby's hand out of its mouth</i><!--emo&???--><img src='http://www.unknownworlds.com/forums/html//emoticons/confused.gif' border='0' style='vertical-align:middle' alt='confused.gif' /><!--endemo-->
jesus christ, buddy. i think our potential posterity is safer without you in the gene pool to torment them.
you just ruined that child's life.
you just ruined that child's life. <!--QuoteEnd--> </td></tr></table><div class='postcolor'> <!--QuoteEEnd-->
elaborate.
you're saying you WOULD tie up your crying infant and raise it and teach it until it reached adulthood, all out of INSTINCT because somehow you would just <i>KNOW</i> it had the disorder?
yeah. keep thinking <i>that</i>.
CORRECT ME I'M WRONG.
if she appears to be sucking her hand or chewing toys, what does that look like to you?
is that suicide where you come from?
like uh, realizing that if my kid only had one eye, something was probly wrong. :(
More like she did it over a long period of time I'm gessing.
It seems to me the parents are to blame for this. If I were the girl I'd consider euthinizing myself. A life with no physical pain, being blind, and no teeth?
Sounds like a horror movie. /me shudders.
Really, tendor is correct, while the parents can be given credit for having the most rare diesease in the world, there is no one else to blame other than the parents for having a child who destroyed themselves.
I mean, the parents come home and see a baby with blood red eyes, or a bloody mouth, and are like "Meh whatever it's just a stage"
I'm sorry but I don't buy it
in order for you to realize that the child has only one eye
<b><i>it has to ONLY HAVE ONE EYE.</i></b>
what i mean by that is, the eye has ALREADY been damaged beyond repair.
that is the present condition of their daughter. you've stated that you could do no better. thank you for doing so.
you know, the ocular jelly is pretty sensitive.
what i meant by that is that she was in the process of destroying her EYES.
you've stated you're retarded. thank you for doing so.
What if you are not watching over the baby falls down, breaks her leg and doesn't have pain sensors? Would you know that the baby was injured until it was too late?
I say they are good parents. If they were bad parents, would they have searched for more info on the problem? Would they have thought about the swim goggles the girl now wears?
why can't you?
what i meant by that is that she was in the process of destroying her EYES.
you've stated you're retarded. thank you for doing so. <!--QuoteEnd--> </td></tr></table><div class='postcolor'> <!--QuoteEEnd-->
so by conjecture, she has no choice by to go through a <i>PROCESS</i> of destroying them?
she can't just scratch her eyes out? it's MANDATORY she go through the truoble of scraping them evvvvvvver so sloooooowly for the benefit of her parents?
your argument is going nowhere, fast.
You walk in to see your baby gnawing on her own hands, drawing blood with apparently no intention of stopping. You grab her hand away and yell at her, and she gets a frightened look in her eye - clearly she was doing something wrong. But she's not even a toddler; eventually she will forget and go right back to chewing on her hand.
Any other child would have its own in-built "you're doing something wrong" -- chewing on your hand *hurts*! In addition, this is a disorder so rare than there are probably 12 people on the entire planet who have it. If you saw your child repeatedly hurting itself, would you come to the conclusion that she had an amazingly rare disorder that prevented her from even knowing she was hurting herself? No. You'd assume she was being disruptive, trying to attract attention, etc.
It's hard to protect a child who can't even tell how hard is too hard to rub her eyes. The article mentions her *sneaking* out of bed to stand in front of a radiator. Her parents weren't standing idly by watching their child give herself second-degree burns. They did the best they could with an extraordinary and extraordinarily difficult situation.
________
Last but not least: are you a parent? No? Then shut it. You clearly have no idea what you're talking about.
To the rest of the posters, please ignore tedor and focus on more useful contributions to the thread.
how does a 3 yearold sneak out of bed. come on.
think about it coil.
and uh, what are useful contributions? saying you feel bad about the kid? it's a forum. people talk. avoid interfering.