Amy, Meghan, Katelyn and Kevin Reithel enjoy a Saturday at home. The day is filled with cartoons and playing in the snow for Katy and her sister. Katy has EB a genetic skin condition that causes blistering with slight friction.
Thursday, June 30, 2005
Katelyn Reithel becoming USA Elementary Celebrity
From the Newsweekly Jan 21, 2004
By Christopher C. Hooton Contributing Writer
Katelyn Reithel, a fourth grader at USA elementary school, lives every day carefully. She has a genetic skin disorder called Epidermolysis Bullosa.
EB affects the body's ability to produce collagen a protein that connects the two layers of skin, the thin epidermis to the dermis, it can also affect tissue on the inside of the body, like the esophagus. With EB, slight friction or pressure can cause blisters to form where the two layers separate and break down.
"Those little fibrels don't hold the skin layers together like they should, so any form of injury, rubbing, even itching a blood blister forms, or she'll peel the whole layer of skin off," Katy's mom and ER nurse, Amy Reithel said.
EB is extremely rare, a doctor can work their whole lives and never run into it. The Reithels have faced many difficulties because doctors are unfamiliar with the disorder only one in a million children are born with.
As a baby the normal injuries, scrapes, and bruises were scary challenges for the new parents. For the first few years of her life, when she was learning to crawl and walk Katy wore kneepads under her clothes.
"We were constantly having boo-boo parties," Reithel said.
The hospital is a familiar place to the family. Katy treks to Children's Hospital in Detroit and Henry Ford.
"By the end of February . . .we will have about 1500 miles on our vehicle just for medical travel alone starting January 1st already' Reithel said. "All the nurses know her by heart."
One of Katy's least favorite aspects of the EB is when her esophagus constricts. She is careful not to eat hard or sharp foods. Her favorite chili cheese fries need to be a little mushy. When her esophagus does constrict she can't eat.
"When it feels like it's time to go and have a dilation, it hurts because sometimes I can barely get my own spit down," Katelyn said.
She said they give her medicine, and while she is under, they put a balloon down her throat to open the esophagus again. It can constrict down to between one and three millimeters. She has had nine dilations all in the last five years.
"They are always scary, every time," father, Kevin said.
"Even dental work has to be done under anesthesia. Just something as simple as a routine cleaning has to be done in an operating room, but this is our normal," Amy said.
The Reithel's main treatment for Katy is trying to minimize injuries and caring for the blisters that form. The blisters are similar to severe burns. Dressings for damaged skin can be expensive and their insurance company was reluctant to cover more effective burn dressings for Katy.
In the future, gene therapy may be a relief for people with EB. Researchers are working on ways to correct the gene mutation in patients' skin and reintroduce it to their bodies.
Katy wears more clothing and is very careful every day while still being a kid.
"For two years now, every spring and fall I've been playing soccer, and I love doing that," Katelyn said.
"Which the dermatologist absolutely hates. We were trying to keep it a secret and she was excited one time and I thought Tore's eyes were going to pop out of his head," Mom added.
She also likes to swim, and the chlorine helps heal the skin. During summer, she uses a pool in a building on their property. She enjoys playing games at her friend's house and listens to Avril and Hillary Duff. She is also putt-putt champion for two years running in Caro. Last year she got a hole in one.
"I got a hole once!" little sister, Meghan added. On Saturdays, she and Katelyn like to watch cartoons and play in the snow.
Katelyn also likes school. She does well there focusing some of the energy on learning that she can't spend in the rough and tumble of the playground. Her favorite subjects are math and reading.
"I like me," Katy said.
The Reithels said they are overwhelmed by the support they have received from the community the last few months.
November, the elementary school took on a project that raised over $13,000 for Thumb Area Epidermolysis Bollusa Foundation and the Reithels.
With that help they will be taking a trip to Stanford, where specialists can help them how to better care for Katy. They will bring back that knowledge as well as the latest research.
"Some of the kids at school are saying 'Oh my gosh you are becoming a huge celebrity.' I don't like that because I'm just still me, but I like how the community is trying to help," Katelyn said.
The Reithels are to be the recipients Sportsman's VFW benefit breakfast Sunday January 25th 8:00 am to 1:00p.m.
By Christopher C. Hooton Contributing Writer
Katelyn Reithel, a fourth grader at USA elementary school, lives every day carefully. She has a genetic skin disorder called Epidermolysis Bullosa.
EB affects the body's ability to produce collagen a protein that connects the two layers of skin, the thin epidermis to the dermis, it can also affect tissue on the inside of the body, like the esophagus. With EB, slight friction or pressure can cause blisters to form where the two layers separate and break down.
"Those little fibrels don't hold the skin layers together like they should, so any form of injury, rubbing, even itching a blood blister forms, or she'll peel the whole layer of skin off," Katy's mom and ER nurse, Amy Reithel said.
EB is extremely rare, a doctor can work their whole lives and never run into it. The Reithels have faced many difficulties because doctors are unfamiliar with the disorder only one in a million children are born with.
As a baby the normal injuries, scrapes, and bruises were scary challenges for the new parents. For the first few years of her life, when she was learning to crawl and walk Katy wore kneepads under her clothes.
"We were constantly having boo-boo parties," Reithel said.
The hospital is a familiar place to the family. Katy treks to Children's Hospital in Detroit and Henry Ford.
"By the end of February . . .we will have about 1500 miles on our vehicle just for medical travel alone starting January 1st already' Reithel said. "All the nurses know her by heart."
One of Katy's least favorite aspects of the EB is when her esophagus constricts. She is careful not to eat hard or sharp foods. Her favorite chili cheese fries need to be a little mushy. When her esophagus does constrict she can't eat.
"When it feels like it's time to go and have a dilation, it hurts because sometimes I can barely get my own spit down," Katelyn said.
She said they give her medicine, and while she is under, they put a balloon down her throat to open the esophagus again. It can constrict down to between one and three millimeters. She has had nine dilations all in the last five years.
"They are always scary, every time," father, Kevin said.
"Even dental work has to be done under anesthesia. Just something as simple as a routine cleaning has to be done in an operating room, but this is our normal," Amy said.
The Reithel's main treatment for Katy is trying to minimize injuries and caring for the blisters that form. The blisters are similar to severe burns. Dressings for damaged skin can be expensive and their insurance company was reluctant to cover more effective burn dressings for Katy.
In the future, gene therapy may be a relief for people with EB. Researchers are working on ways to correct the gene mutation in patients' skin and reintroduce it to their bodies.
Katy wears more clothing and is very careful every day while still being a kid.
"For two years now, every spring and fall I've been playing soccer, and I love doing that," Katelyn said.
"Which the dermatologist absolutely hates. We were trying to keep it a secret and she was excited one time and I thought Tore's eyes were going to pop out of his head," Mom added.
She also likes to swim, and the chlorine helps heal the skin. During summer, she uses a pool in a building on their property. She enjoys playing games at her friend's house and listens to Avril and Hillary Duff. She is also putt-putt champion for two years running in Caro. Last year she got a hole in one.
"I got a hole once!" little sister, Meghan added. On Saturdays, she and Katelyn like to watch cartoons and play in the snow.
Katelyn also likes school. She does well there focusing some of the energy on learning that she can't spend in the rough and tumble of the playground. Her favorite subjects are math and reading.
"I like me," Katy said.
The Reithels said they are overwhelmed by the support they have received from the community the last few months.
November, the elementary school took on a project that raised over $13,000 for Thumb Area Epidermolysis Bollusa Foundation and the Reithels.
With that help they will be taking a trip to Stanford, where specialists can help them how to better care for Katy. They will bring back that knowledge as well as the latest research.
"Some of the kids at school are saying 'Oh my gosh you are becoming a huge celebrity.' I don't like that because I'm just still me, but I like how the community is trying to help," Katelyn said.
The Reithels are to be the recipients Sportsman's VFW benefit breakfast Sunday January 25th 8:00 am to 1:00p.m.
Monday, June 27, 2005
TLC :: The Boy Whose Skin Fell Off
TLC :: The Boy Whose Skin Fell Off
I found this difficult to watch, though I deeply wanted to. I know a little girl with EB. I wrote about Katelyn Reithel for the local paper. USA elementary school had a penny drive to raise money for her treatment. She is an easy girl to fall in love with. When I subbed for her class, her classmates told me that I made her a celebrity. When I see her in the classroom or at church and say hi, I feel I know her, there is a special place in my heart for her, a place where prayers never cease and the incense of God's presence is always burning. When I realized that Jonny's story is the same as her's I cried.
I found this difficult to watch, though I deeply wanted to. I know a little girl with EB. I wrote about Katelyn Reithel for the local paper. USA elementary school had a penny drive to raise money for her treatment. She is an easy girl to fall in love with. When I subbed for her class, her classmates told me that I made her a celebrity. When I see her in the classroom or at church and say hi, I feel I know her, there is a special place in my heart for her, a place where prayers never cease and the incense of God's presence is always burning. When I realized that Jonny's story is the same as her's I cried.
Manifesto
I found this thought provoking booklet at the coffee shop friday. I couldn't get it out of my head. Any one have any idea where it is from?
Monday, June 20, 2005
Elaine's Scary First Sermon 6-19-05
Elaine's Scary First Sermon 6-19-05
My wife preached yesderday. She is a licensed minister too. She was good. It turned me on to see her thinking and exegeting. It was a difficult text. She said, "God is not pro or anti family, He is pro community of Christ. God wants us to come into His family and see His family as ours."
What does that mean to our model for family ministry?
My wife preached yesderday. She is a licensed minister too. She was good. It turned me on to see her thinking and exegeting. It was a difficult text. She said, "God is not pro or anti family, He is pro community of Christ. God wants us to come into His family and see His family as ours."
What does that mean to our model for family ministry?
Tuesday, June 14, 2005
Jurry rigged baptismal heater
The water cycled through the pot, cold in from the head of the tank and hot back to the foot. I had to tie a knot in the inoming hose to try to equalize the flow so it didn't overflow or run dry. We found the system to work, but too slowly to be effective. If I had been able to run it all night Saturday it may have made a difference.
Subscribe to:
Posts (Atom)