Society for Children and Adults announces 2011 telethon poster child
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A swing set and a mail box are what Emily Brook Davis wants for her fifth birthday. Her "Pappy" Doug Chaney is hoping that the little girl can stay out of the hospital.
Emily, the 2012 poster child for Highland County Society for Children and Adults telethon, suffers from familial dysautonomia, also known as Riley-Day syndrome, an auto-immune disorder. According to the National Dysautonomia Research Foundation, it effects the control of involuntary functions, and can include heart rate, body temperature, or - in Emily's case - breathing.
Chaney said 2010 was the first year in Emliy's entire life that she was able to go more than a month without being admitted to the hospital.
She has had a trachea installed in her windpipe to assist when she stops breathing since before she was two years old. A bulb is attached to the devise, and by squeezing it, it forces air into her lungs, helping her breathe. She is especially susceptible to communicable diseases, so during cold and flu season, she spends most of her time in her Brushcreek home.
Emily has been using a feeding tube since she was 7 months old.
"She's never really had 'real' food," Chaney said. "Sometimes she'll get a bowl of cereal or popcorn and sit on the floor here and pretend to eat it. She doesn't try to eat it because she knows it'll make her sick."
Wearing a purple Tink Bell sweatshirt at she went skipping through the house, Chaney asked Emily, "Whose house is this?"
"My house!" Emily squealed as she gave him a hug.
"Who runs this house?" he asked.
"I do!"
Emily is all smiles as she talks to "Pappy" before running away to go play with her room full of dolls.
Chaney, who has custody of the child, said he is assisted by family members and a nurse who stays with Emily when he has to go to work at his job in Columbus.
Society Director Gayle Coss said helping families like Emily's is what the society is all about.
"It just touches my heat that there is a little girl that age who can't go out and play," Coss said. "She has been in and out of the hospital about 10 days every month. She can't go to school with all the kids running around. I think it's just very touching. Those are the kinds of kids we like to work with and help. Especially when the parent, like Doug, has sole custody. It has got to be really difficult for him."
While most of Emily's medical expenses are taken care of by Medicaid, Chaney said, the society helps them with gas vouchers to get to doctor appointments in Dayton and Cincinnati.
Coss said that even though Highland County has fallen on difficult times financially, Highland County residents always reach deep into their pockets to give as much as they can.
During the 2010 telethon, the society raised $148,300. The first telethon, held in 1973, raised $1,715. The 2007 event raised an all-time high of $217,043.
"I'm just holding my breath to see what happens this year," Coss said.
The event will once again be hosted by Ernie Blankenship. The Hillsboro telethon will be held at U.S. Bank, and the Greenfield event will be held at McClain High School.
Emily will turn 5 years old on March 25, the day before the telethon, and she said she is excited about playing outside when the weather gets warm.
Chaney is hoping that within the next six months Emily will be able to have the "trach" and the feeding tube removed. That would allow her to go to school, and be around other children.
By the time the 2012 telethon rolls around, Cheney said Emily could bear little resemblance to the sick child she once was.
"That would be the dream," he said.
A swing set and a mailbox are what Emily Brook Davis wants for her fifth birthday. Her "Pappy" Doug Chaney is hoping that the little girl can stay out of the hospital.
Emily, the 2011 poster child for Highland County Society for Children and Adults telethon, suffers from familial dysautonomia, also known as Riley-Day syndrome, an auto-immune disorder. According to the National Dysautonomia Research Foundation, it affects the control of involuntary functions, and can include heart rate, body temperature, or – in Emily's case – breathing.
Chaney said 2010 was the first year in Emliy's entire life that she was able to go more than a month without being admitted to the hospital.
She has had a tracheostomy tube installed in her windpipe to assist when she stops breathing since before she was 2 years old. A bulb is attached to the device, and by squeezing it, it forces air into her lungs, helping her breathe. She is especially susceptible to communicable diseases, so during cold and flu season, she spends most of her time in her Brushcreek home.
Emily has been using a feeding tube since she was 7 months old.
"She's never really had 'real' food," Chaney said. "Sometimes she'll get a bowl of cereal or popcorn and sit on the floor here and pretend to eat it. She doesn't try to eat it because she knows it'll make her sick."
Wearing a purple Tinker Bell sweatshirt at she went skipping through the house, Chaney asked Emily, "Whose house is this?"
"My house!" Emily squealed as she gave him a hug.
"Who runs this house?" he asked.
"I do!"
Emily is all smiles as she talks to "Pappy" before running away to go play with her room full of dolls. She is a fan of Blues Clues, prompting her desire for a toy mailbox.
Chaney, who has custody of the child, said he is assisted by family members, including sister Pam Chaney who is a board member for the society, and a nurse who stays with Emily when he has to go to work at his job in Columbus.
Society Director Gayle Coss said helping families like Emily's is what the society is all about.
"It just touches my heart that there is a little girl that age who can't go out and play," Coss said. "She has been in and out of the hospital about 10 days every month. She can't go to school with all the kids running around. I think it's just very touching. Those are the kinds of kids we like to work with and help. Especially when the parent, like Doug, has sole custody. It has got to be really difficult for him."
While most of Emily's medical expenses are taken care of by Medicaid, Chaney said, the society helps them with gas vouchers to get to doctor appointments in Dayton and Cincinnati.
Coss said that even though Highland County has fallen on difficult times financially, Highland County residents always reach deep into their pockets to give as much as they can.
During the 2010 telethon, the society raised $148,300. The first telethon, held in 1973, raised $1,715. The 2007 event raised an all-time high of $217,043.
"I'm just holding my breath to see what happens this year," Coss said.
The event will once again be hosted by Ernie Blankenship. The Hillsboro telethon will be held from 6-10 p.m. at U.S. Bank, and the Greenfield event will be held at McClain High School.
Emily will turn 5 years old on March 25, less than a week before the March 30 telethon, and she said she is excited about playing outside when the weather gets warm.
Chaney is hoping that within the next six months Emily will be able to have the "trach" and the feeding tube removed. That would allow her to go to school and be around other children.
By the time the 2012 telethon rolls around, Cheney said Emily could bear little resemblance to the sick child she once was.
"That would be the dream," he said.
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