Emily Davis named poster child for 2016 HCSCA Ernie Blankenship Telethon

Peebles Elementary student Emily Davis has been selected as the poster child for the 2016 Ernie Blankenship Radio-Telethon for the Highland County Society for Children and Adults.

This is the 44th telethon and the fourth one since being renamed in honor of longtime telethon emcee Blankenship. The 2016 telethon is set for Wednesday, March 30 from 6-9 p.m. and will be held at the uptown Hillsboro Merchants National Bank branch, located at 100 North High Street. The Hillsboro telethon will be broadcast on the local community access channel of the Time Warner Cable System, and on WSRW 101.5 and WSRW AM 1590. In Greenfield, the event will be broadcast from 6 p.m. until 9 p.m. from the McClain High School Media Room on the local community access channel of Time Warner Cable System along with periodic broadcasts on radio station WVNU FM 97.5.

The 2016 telethon is the second time Davis has been honored as the telethon poster child, as Davis, then 4, was named the poster child in 2011. Davis lives in Brushcreek Township with her “pappy,” Doug Chaney. She and her aunt, Pam Chaney, met with The Highland County Press on Monday morning.

Davis 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 and - in Emily's case - breathing. 

In spite of the many challenges associated with Riley-Day syndrome, Davis has made tremendous progress since 2011. While she had a tracheostomy tube installed in her windpipe at age 2 to assist when she stopped breathing, she no longer requires one.

“There have been a lot of improvements,” Chaney said. “The most medical issues that she’s had in the past several months has been her eyes because with Riley-Day syndrome, they have very dry eyes."

Davis has had two partial tarsorrhaphies, a procedure to close part of her eyelids, to protect her eyes.

“Her eyes are closed about 30 percent on each side,” Chaney said. Even though that’s permanent, it can be undone later, if need be. That is helping keep her eyes healthy.”

In addition, Davis has to go to the doctor every six weeks for special eye drops, called an autologous serum, to relieve her dry eyes.

“They draw blood and make eye drops out of her blood,” Chaney said.

While Davis often struggles with the respiratory diseases common to Ohio each winter, coupled with her symptoms from Riley-Day syndrome, Chaney said she has “done very well this past winter,” and her hospital stays have been primarily due to her eyes.

“If she even rubs her eyes, she might get an abrasion,” Chaney said. “When she was in the hospital last fall, she had one eye completely shut and one half shut at one time. She had to be in the hospital because she had five or six different drops that had to be used every hour, and you’d have to wait five minutes between the drops. She was in the PICU [Pediatric Intensive Care Unit], so she had her own nurse because it was a full-time job just putting drops in her eyes.”

Davis’ disease affects her respiratory system, requiring breathing treatments twice a day, so while she is a Peebles Elementary student, she goes to class in the afternoons.

“They tried sending her to school, but because of her immune system, she’d be at school for a couple weeks and then she’d be in the hospital a couple weeks,” Chaney said. “So she does home instruction, but she actually does go to school for the home instruction. As the kids are leaving school in the afternoon, she’s going in for her private tutoring.”

One major highlight of the past winter has been the lack of hospital stays for respiratory illness, Chaney said.

“She has not, thank the Lord, been in the hospital for several months, and she’s not had any respiratory issues this winter for the first time in her life,” Chaney said. “She’s the healthiest she’s been.”

As Riley-Day syndrome causes patients to aspirate when they try to eat, Davis has been using a feeding tube since she was 7 months old.

“She has to be tube fed, although they’re doing studies and hoping eventually maybe she can swallow some,” Chaney said. “She has another ‘swallow test’ coming up.

“They will see if things are doing better and going where they should, so she would eventually be able to eat. Right now, if she tastes anything, she just licks it and spits it out, and we swab out her mouth. In spite of that, she loves to cook.”

Davis said that she loves to bake blueberry muffins, and the first thing she would like to eat would be blueberry muffins or cookies.

“I like to cook any desserts and pancakes and waffles,” Davis said.

Chaney, a retired teacher from Bright Local Schools, helps take care of Davis during the day, along with nurses who assist at her home while her “pappy” is at work.

“She wears all kinds of hats,” Davis said, who said Chaney is her “backup nurse.”

In her spare time, Davis enjoys playing Infinity video games and loves reading and listening to audiobooks, particularly “The Boxcar Children” series, which she enjoys listening to during her trips to Cincinnati for her doctor’s appointments.

“She loves mysteries,” Chaney said. “She calls herself Sherlock and I’m Watson, and we try to solve the mysteries.”

“But we never do,” Davis said. “Besides, there aren’t any mysteries around here.”

Davis also collects geodes, likes to sing in church and enjoys spending time with her family. An animal lover, Davis has two dogs, Sammy and Trigger, and two cats, Bart and Bootsie. Davis said she enjoys playing with animals and birdwatching.

“I like any kind of animals, except for snakes and spiders or mice and rats,” Davis said.

Davis said that she is also interested in whales and water and is hoping to take swimming lessons at the Highland County YMCA.

Davis will be turning 10 on March 25 and is planning a party with an “Alice in Wonderland” theme. While she is hoping to get video games, binoculars and “Ever After High” books, Davis also wants to give back to the society that has done so much to help her and her family over the years.

Last year, Davis donated over $200 to the telethon, which was held on the night of her 9th birthday. Instead of gifts, Davis asked for donations made to the society for her birthday party. She is raising money again this year to donate to the telethon to give back to the society who has supported her through the years.

“She’s collecting money for the society for her birthday,” Chaney said. “The society has paid for gas vouchers. They helped pay for her glasses. They’ve helped with special needs that she had that weren’t covered by insurance. The society has just continued to help her.”

Since 1997, the society has raised over $100,000 each year, helping thousands of adults and children across Highland County. The two Rotary Clubs raised almost $104,000 during the 2015 event, all of which is used by the Society to provide assistance and services to Highland County children and adults who have extraordinary expenses for necessary medical treatment, transportation, equipment and other health care devices. It works in conjunction with other local government and private agencies to provide financial assistance to Highland County residents who have medical expenses not covered by insurance or other programs.

The community is encouraged to attend the telethons in person at either location or listen live to WVNU 97.5 FM, WSRW 101.5 FM or WSRW AM 1590.

Pledges may be mailed to: HCSCA, P.O. Box 258, Hillsboro, Ohio 45133.