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Notre Dame student looks to win Cystic Fibrosis scholarship contest

| Monday, October 9, 2017

Sophomore Emily Apakian knew her painting needed to be extraordinary.

After several days and hours spent poring over her canvas, she picked up her paintbrush and dipped it in colors she felt were most natural for the finishing touches of her painting. With a specific image in mind, she slowly guided her paintbrush over the canvas’s surface before stepping back to view the finished product.

The result is a close-up portrait of a brunette girl with arms outstretched and a wide smile on her upturned face. Her exposed neck displays a red and blue trachea leading down to a pair of lungs, as if peering at her through an x-ray. Red, yellow and purple flowers stud the dark-green background behind her.

“Roses are sort of the symbol for cystic fibrosis,” Apakian said. “I guess it symbolizes how I try to live my life, trying to accept whatever happens to me with a positive embrace.”

Painting this picture was no ordinary past-time: Apakian submitted it for a AbbVie Cystic Fibrosis (CF) Scholarship contest along with an essay and list of her achievements for a chance to win up to $22,000.

The scholarship is specifically intended for American undergraduate and graduate students with CF, which, according to the CF’s Foundation website, is “a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.” Apakian is one of what the website said is approximately 30,000 Americans diagnosed with the disease.

“Some people are diagnosed when they’re older, but I was diagnosed three weeks after I was born, so [CF] has been part of my life forever,” Apakian said. “It’s hard to describe because I’ve lived with it my whole life, so I honestly don’t know anything different.”

Along with the painting, Apakian submitted an essay about a CF research study she participated in when she was in middle school. For the study, Apakian said she had to eat “a disgusting powder” whose flavor would not be disguised despite her mother’s efforts to bake it into different types of food. After many failed efforts to mask the powder, Apakian said she finally decided to eat it plain to help research efforts.

“That [study] increased my awareness of how I want to do something that will help with CF,” Apakian said. “I think it’s just really important, too, especially because so much research has gone into CF for me to do whatever I can to help further that research because there’s so much not known about it.”

After winning an initial $3,000 academic scholarship in June along with 39 other undergraduate and graduate scholars who won the first round of the contest, Apakian is now in the running for the undergraduate $22,000 Thriving Student Scholarship, which will be awarded to one of the undergraduate finalists by the end of October.

Online voting to determine the winner of the $22,000 is currently taking placing on AbbVie’s website. The number of votes a finalist obtains comprises 30 percent of his or her score while the judging panel’s criteria decides the other 70 percent.

“If I win [the Thriving Student Scholarship], I can share that story more with people and help advocate for CF,” Apakian said. “For some people with CF, it can be hard because of so many medical complications, so winning can maybe show people that it’s possible to deal with CF.”

As symptoms differ case-by-case for CF patients, Apakian said her symptoms include pancreatic-insufficiency that makes it difficult for her to digest most foods other than fruits and vegetables, a persistent cough and longer-lasting regular illnesses.

Though Apakian said Notre Dame’s Sarah Bea Disability Services have been helpful, she said transitioning to college and implementing her routine of treating her CF symptoms was an adjustment for her.

“Coming into [Notre Dame] and having to keep that schedule the same is different because there are some things I need to do, like order and pick up my own medication,” Apakian said. “It’s just small things that are different, but I have good friends who I’ve told about it, and they support me, and it’s really nice to have that support group who don’t mind if I have to go do my treatments while something else is going on.”

Along with what Apakian said are “many medications” that she has to take, she also dedicates 40 minutes of her morning and night every day to CF treatment. When she is sick, she does it three times a day.

“I usually have to wake up earlier to do respiratory clearance treatments, so that involves a nebulizer, which I use to breathe in my saline solution that helps clear the mucus in my lungs,” Apakian said. “I also use a vest which literally shakes you to help get out the mucus.”

With what the CF Foundation’s website said is an average lifespan of about 37 years for CF patients, Apakian said she struggles to accept the fact that CF can be fatal.

“I feel like I need to motivate myself by reminding myself that this is an illness that could potentially go downhill at any time, so that’s definitely a challenge for me,” Apakian said. “And I know that. I just have trouble balancing that.”

As a chemical engineering major, Apakian said she is considering going into the bioengineering field after graduation to dedicate some of her life to helping people infected with CF.

“I try not to think about the negativity that is brought by [CF] because I’ve had a good life so far,” Apakian said. “It helps having such a good family and good friends who support me and love me no matter what happens, too.”

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About Kelli Smith

Kelli Smith is a senior at the University of Notre Dame. Originally from El Paso, Texas, she served as Editor-in-Chief at The Observer for the 2019-20 term. She is pursuing majors in political science and television with a minor in journalism. // Twitter: @KelliSmithNews

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