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Knoxville baby struggles with rare disorder
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Friday, March 14, 2008
Subject: Knoxville baby struggles with rare disorder
Time: 10:02:00 AM EDT
Author: patoco2
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Subject: Knoxville baby struggles with rare disorder
Time: 10:02:00 AM EDT
Author: patoco2
Knoxville baby struggles with rare disorder
By: Tim Dale, Photographer
By: Yvette Martinez, Reporter
Date created: 2/26/2008 3:42:08 AM
KNOXVILLE, Tenn - Every day is a miracle for a local baby struggling with a rare chromosome disorder called Trisomy 14
"We had no idea that there were any problems with Klaire... throughout the pregnancy ultrasounds and tests that were ran all came back with no problems whatsoever," Randall Sampson says of his daughter.
Klaire Sampson was born prematurely on January 14, 2007, but her complications were linked to more than an early birth.
"Dr. Guider calls back and says Klaire has an extra chromosome on her 14 chromosome and it's an extremely rare condition. They really don't know a whole lot about it, but it's not good," Randall Sampson recalls.
Klaire is one of only 6 people in the country, and 16 in the world with Trisomy 14.
"There are 3 chromosomes in the 14 spot and there are supposed to be 2," Pediatrician Dr. Bud Guider explains.
Randall Sampson and his wife Royal have five children: Kila, Aaron, Kallie, Khloe and Klaire, who is their youngest. At one year old, she's already been through a lifetime of medical complications.
"She's on a trach, and she's fed through a g-tube. She's 14 months old now, and we're just taking it day by day," Randall says.
Both the trach and the feeding tube may be with Klaire for the rest of her life, which means her family may never hear her speak. However, the tubes have helped her move past some life-threatening moments.
Royal and Randall Sampson have searched everywhere for answers about Trisomy 14, but it's such a rare condition, not even doctors can tell them what to expect for their daughter.
"The prognosis is not clear, and we don't really know what to expect in the future," Dr. Guider says, adding that Klaire has already come a long way.
Complications from Trisomy 14 have challenged the Sampson family, changing every aspect of their lives.
"I think one of the biggest things it's done is made our children much more compassionate, much more understanding," Randall said.
The Sampson children have even taken their medical experiences with Klaire to the classroom. Twelve-year-old sister Kalli explained a trach to one community group using her doll.
"I was thinking on either changing the feeding tube or the trach because I've already done a speech on home health," Kalli says.
Although Klaire can't walk or talk, her life is already communicating so much.
"I like it whenever she starts to smile and everything, and she laughs... you can watch her laugh sometimes," Kalli says.
Randall says he and his wife have changed the way they look at the challenges of having a child with special needs.
"Instead of asking why us, why not us?"
Dr. Guider continues to coordinate a team of medical specialists in Knoxville and Cincinnati to search for answers in treating Klaire and the mystery that is Trisomy 14.
"Only God knows what the outcome is going to be, but we will be aggressive with the approach and do our best to maximize her potential," Dr. Guider says.
The Sampsons say another source of strength for them is the friends they have made through Klaire's East Tennessee Children's Hospital Care Page.
To visit Klaire's ETCH care web page, go to ETCH.com, and click on the "Care Pages" icon. Type in "klairesampson" (with no spaces).
Klaire Sampson was born prematurely on January 14, 2007, but her complications were linked to more than an early birth.
"Dr. Guider calls back and says Klaire has an extra chromosome on her 14 chromosome and it's an extremely rare condition. They really don't know a whole lot about it, but it's not good," Randall Sampson recalls.
Klaire is one of only 6 people in the country, and 16 in the world with Trisomy 14.
"There are 3 chromosomes in the 14 spot and there are supposed to be 2," Pediatrician Dr. Bud Guider explains.
Randall Sampson and his wife Royal have five children: Kila, Aaron, Kallie, Khloe and Klaire, who is their youngest. At one year old, she's already been through a lifetime of medical complications.
"She's on a trach, and she's fed through a g-tube. She's 14 months old now, and we're just taking it day by day," Randall says.
Both the trach and the feeding tube may be with Klaire for the rest of her life, which means her family may never hear her speak. However, the tubes have helped her move past some life-threatening moments.
Royal and Randall Sampson have searched everywhere for answers about Trisomy 14, but it's such a rare condition, not even doctors can tell them what to expect for their daughter.
"The prognosis is not clear, and we don't really know what to expect in the future," Dr. Guider says, adding that Klaire has already come a long way.
Complications from Trisomy 14 have challenged the Sampson family, changing every aspect of their lives.
"I think one of the biggest things it's done is made our children much more compassionate, much more understanding," Randall said.
The Sampson children have even taken their medical experiences with Klaire to the classroom. Twelve-year-old sister Kalli explained a trach to one community group using her doll.
"I was thinking on either changing the feeding tube or the trach because I've already done a speech on home health," Kalli says.
Although Klaire can't walk or talk, her life is already communicating so much.
"I like it whenever she starts to smile and everything, and she laughs... you can watch her laugh sometimes," Kalli says.
Randall says he and his wife have changed the way they look at the challenges of having a child with special needs.
"Instead of asking why us, why not us?"
Dr. Guider continues to coordinate a team of medical specialists in Knoxville and Cincinnati to search for answers in treating Klaire and the mystery that is Trisomy 14.
"Only God knows what the outcome is going to be, but we will be aggressive with the approach and do our best to maximize her potential," Dr. Guider says.
The Sampsons say another source of strength for them is the friends they have made through Klaire's East Tennessee Children's Hospital Care Page.
To visit Klaire's ETCH care web page, go to ETCH.com, and click on the "Care Pages" icon. Type in "klairesampson" (with no spaces).
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