Youth Tour and a Special TeenBy Michael W. Kahn | ECT Staff Writer Published: August 1st, 2011
Eosinophilic esophagitis doesn’t exactly roll off the tongue for most people, but it does for Danielle Travis. At 17, Danielle has been living the last three years with the disease, which makes it impossible for her to eat almost all foods.
But one thing it didn’t keep her from doing was taking part in NRECA’s 2011 Youth Tour—an experience that would include making new friends who would show her an incredible act of kindness.
Eosinophilic esophagitis causes the body to produce abnormally large amounts of white blood cells that can lead to allergy-related illnesses. Diagnosed at 14, things became worse for Danielle last December.
“I would eat foods that I thought were safe and OK, and I would end up having my throat swell and close, and end up going to the emergency room,” she said. The definition of “safe” foods would even change within hours.
“I would have a granola bar in the morning and be fine. And I would have that same granola bar that evening and would have to go to the emergency room.”
“Foods just became unsafe and scary.”
TRIAL AND ERROR
On April 1, doctors at Cincinnati Children’s Hospital put her on a purely liquid, nutritionally balanced diet. On July 1 she returned to the hospital from her Aiken, S.C., home.
“I got my second endoscope, which is where they stick a tube down into your stomach and take pictures,” she matter-of-factly told a reporter. “I had no white blood cells, which was a very good thing. That means that my palate was pretty much clean. They gave me the go-ahead to add back on one food, and I chose corn.”
Through September she is eating corn products, and will then return to the hospital to recheck for white blood cells. “If they are not there that’s a good sign and I can add back on one more food like rice or beef. But if they are there then that means corn failed, and I have to take away corn. It’s really like a trial-and-error thing.”
SO YOU WANT TO GO ON YOUTH TOUR
As easygoing as he is, Van O’Cain admits he had reservations when Danielle applied for Youth Tour, the annual trip to Washington, D.C., for teenage electric co-op members.
O’Cain is director of public and member relations at The Electric Cooperatives of South Carolina, and a chaperone on the trip to the nation’s capital. He met Danielle while judging prospective Youth Tour students from Aiken Electric Cooperative.
“During the interview she told us about having this disease,” he recalled. “She’s dealing with it, but she’s such a strong young woman that she’s not letting it get her down. I was impressed by that, but I did worry about her being on this trip because we’re out in Washington, D.C., and food is a huge part of what we do. We’re having pizza parties, and we’re going out to eat, and I worried it was going to have a toll on her.”
Danielle quickly reassured him, explaining how she uses meal times to socialize. “She made me feel better about sending her and lessened my worries,” O’Cain said. He gave her the OK to make the June 2011 trip.
ON THE GO
Organizers always make the most of participants’ time during Youth Tour. For most teenagers that means figuring out how to be up, showered, dressed and in the lobby by 7 a.m.; for Danielle, the concerns were different.
“I had to plan how many juice boxes to pack each day,” she said of the special nutritional formula she must drink. “There’s a certain number of calories that you have to intake and outtake. It’s a pretty calculated formula; it’s not just however many you feel like,” she said.
O’Cain decided from day one that he would not make a big deal of Danielle’s condition. “She’s just like everybody else. We don’t need to broadcast, ‘Danielle can’t eat when we go places,’ so we never did that,” O’Cain said. “But she, on her own, would talk to the students. She opened up to everybody.”
Danielle sees no reason to act any other way.
“I’m not embarrassed about this,” she said. “I want people to know about this. I’m proud of it, it’s who I am, and it’s made me stronger, and I want everybody else to know because it’s not a well-known disease.”
And Danielle enjoyed Youth Tour to its fullest. “I got to meet so many new people and I got to see so much.”
AN ACT OF KINDNESS
On its first full day in Washington, the South Carolina group went for breakfast at Old Country Buffet, where O’Cain said Danielle made a pleasant discovery.
“She ran up to me so excited and said they have a slushie machine here,” O’Cain said. Odd though it may sound, her diet allows artificial flavors and sugars.
“But she went to pour it out and it was just mush, because it was the morning hours and it was in defrost mode. She was so disappointed.”
A few days later, Dhruv Patel and Adam Regoni, who’d become friends with Danielle, asked O’Cain if they could stop at a gas station. When he asked why, the boys responded that everyone on the trip wanted to buy Danielle a slushie.
“I was just so amazed by that. It was their initiative. It wasn’t me, it was the students who wanted to do something nice for her because they really liked her.” So the next day he asked the bus driver to stop at a 7-Eleven.
“We didn’t tell her—it was a total surprise. I got off the bus with a couple of the boys, we went in and thankfully the slushie machine was working and they bought her a giant one,” O’Cain said.
Danielle said she was so tired that she didn’t even realize the bus had stopped. But someone blindfolded her. “And the next thing you know, I had this big cold thing in my hand, and I opened my eyes and it’s an extra-large blue raspberry slushie.”
“I was just so overjoyed. It was the best thing ever,” she said. “It tasted sweeter than any other slushie I’ve ever had.”
For Danielle, living with eosinophilic esophagitis remains a challenge. “I only have one food back. I’m still drinking a lot of formula,” she said. “Each day is a little bit easier than the last day. There are hard parts, but the hard parts are more spread out.”
Danielle is about to begin her senior year in high school, but is already looking ahead to the University of South Carolina’s nursing program.
“The reason I want to become a nurse is because when I have been to the emergency room, the first people who see me there are the nurses. The nurses have definitely made an impact on my life. They are really nice to me and calm me down and help me. I want to be that nurse that reciprocates that kindness to a child.”
That comes as no surprise to Steve Uram, an NRECA grassroots legislative advisor.
“Youth Tour creates a common bond between students from Alaska to Florida,” Uram said. “No matter where they came from, or how strange the accent, they share the same small town rural American co-op values.”