Point Marion woman continues to beat the odds
Jessica Everly was only 4 years old when she was diagnosed with cystic fibrosis, a genetic disorder that affects the body's respiratory and digestive systems. Now 24, she is 15 years older than doctors told her she would live to be.
“I have 29 percent lung function,” said Everly, who lives in Point Marion. “I don't really think about it. I just try to live my life.”
Cystic fibrosis causes a continuous buildup of thick mucus in the lungs and air passages. Those with the disorder often feel as though a heavy weight is sitting on their chest, making it hard to breathe normally.
“Jessica has to go through chest physical therapy every day,” said Jennifer Kondrla-Sharp. “Someone has to pound on her back repeatedly to help break up the mucus in her lungs. She sleeps with an oxygen mask.”
Kondrla-Sharp, 35, of Uniontown is Jessica's eldest sister. She and Jessica's younger sister, Samantha Everly, 22, do not have cystic fibrosis. Both parents must carry the gene for a child to be born with the disorder, but it does not happen to every child.
“Jessica is one of the strongest people I've ever met in my life, and I can honestly say she's one of my heroes,” Kondrla-Sharp said. ”It's crazy to say I look up to her, because I'm the older sister, but it's true. Despite her illness, she's still accomplished so much in her life and keeps going.”
Cystic fibrosis causes nutritional issues, as the pancreas is unable to secrete the necessary enzymes to digest many foods. Because of this, Jessica is one of many with the disorder who have difficulty gaining weight.
Cystic fibrosis is usually diagnosed at birth, but Jessica was not as fortunate.
“She showed no signs of having cystic fibrosis. I didn't know such an illness existed,” said her mother, Jenny Everly, 51, of New Salem. “As a toddler, she had a cough or cold regularly, but one day it wouldn't go away. It was a battle to find out what was wrong with her. Her pediatrician said she was fine.”
Doctors told Jenny Everly her daughter simply had allergies. They treated her with shots, but Jessica wasn't improving. They blamed her increasing stomach aches on growing pains.
“I knew it wasn't allergies, but the doctors threatened to drop me as a patient if I continued to bring her to their office so often. By that time, she'd lost so much weight, I had to carry her around. She couldn't support herself,” said Jenny Everly. “I had to do something, so I took her to Children's Hospital in Pittsburgh. The first doctor we met asked us why we weren't in the cystic fibrosis wing. He could tell just by looking at her what was wrong. He was willing to bet his reputation on it.”
Jessica was immediately hospitalized and diagnosed shortly afterward. The odds were against her, as doctors said she was drowning from the pneumonia filling her lungs.
“A few days after Thanksgiving, they told me my daughter wasn't going to make it. I was preparing for the worst,” said Jenny Everly. “Ever since that day, her illness has just become a normal part of our lives. The hospital became a second home to us.”
The average life expectancy for a child suffering from cystic fibrosis at that time was 9 years old.
“We got through it with prayer and belief in the Lord and the doctors at Children's Hospital,” Jenny Everly said.
Following her initial diagnosis, Jessica's hospital visits became significantly more frequent each year. At age 12, doctors removed her upper right lung because it collapsed.
Her mother made the decision to remove both Jessica and Samantha from public school and educate them at home after the surgery. Since then, the longest Jessica has gone without an extended stay in the hospital is six months.
“It's very hard for us to be around Jessica when we're sick with colds. It's very dangerous for her,” said Kondrla-Sharp. “I can't even begin to list all the medicine she's on.”
Jessica has a permanently implanted IV line in her side for when she is in the hospital and has to be given IV antibiotics. Her IV treatments continue for several weeks at home after discharge. She takes a total of 30 pills each day, including pancreatic enzyme tablets before each meal. She must remain on a high-calorie, high-fat diet to maintain her weight.
“She struggles. The cystic fibrosis in her lungs is taking over. She's just not functioning the way she should be,” Jenny Everly said. “Every time she's admitted to the hospital, the more damage there is. Sometimes she can't breathe after taking just a few steps. It's really taking over her life.”
Jessica often finds it difficult to do things many healthy people take for granted, such as having a job or walking up a flight of stairs.
“I worked at Sheetz for eight months, but I kept getting sick from being around all the different people, so I couldn't do it anymore,” said Jessica. “I'd like to get married someday and have a little bit of a normal life. I'd like to be able to run.”
It can be dangerous for people with cystic fibrosis to reproduce, and many struggle to maintain long-term relationships.
“When we were younger, it was hard to understand why she couldn't do everything we were doing, but the most amazing thing about Jessica is that she never has a ‘poor me' attitude,” said Kondrla-Sharp. “She's even been in a relationship for a long time now. Her boyfriend, Caleb, is very supportive. She strives to live normally. She puts no limits on herself and lets nothing hold her back.”
Although cystic fibrosis is a very debilitating illness, many sufferers don't look sick.
“She doesn't tell anyone she's sick. She keeps it inside. You can't tell right away,” said Jessica's brother-in-law, Brandon Sharp, 28, of Uniontown. “She's a really good girl who wouldn't hurt a fly. Even though she's sick, she worries about other people more than herself.”
Today, the average life expectancy for someone with cystic fibrosis is 39 years. However, many live to be older than 50, if they undergo a successful lung transplant.
“The doctors always told us there would come a day when someone would approach us about a lung transplant, but they never went into detail, because none of us wanted to focus on that,” said Jenny Everly. “At the end of 2012, the doctors told us it was time. We needed to start talking to the transplant team and fundraising.”
Jessica is undergoing an extensive testing process to determine if she should be placed on a transplant list at UPMC Shadyside Hospital in Pittsburgh. Should she receive the double lung transplant, her health insurance will not cover all the costs of the procedure and post-operation care.
Her family and friends are taking a pro-active approach to their fundraising for the surgery, having held several benefit events throughout the area. The group organized a spaghetti dinner, held in September, at the Olive Garden restaurant in Uniontown. The staff donated their time, as well as the pasta, to the effort.
Family friend Angela Hlatky heads the campaign known as “Jessica's Journey.”
“Jessica is my best friend. I see what she's going through first-hand, and it touches my heart,” said Hlatky, 30, of Brownsville. “It's my goal to raise her $25,000, and no one is going to stop me. I want her to have this transplant and not have to worry about medical bills. Sometimes, your friends become your family. She's family to me.”
“Jessica's Journey” held an oldies dance, featuring dancing and a Chinese auction, with all proceeds going toward their efforts. The group also recently held a “Bingo Bash.”
They have teamed up with Uniontown retailer Five Below to pass out fliers containing a special code during the first week of December. Five Below will donate 10 percent of each purchase made using that code to “Jessica's Journey.”
The family sells “Jessica's Journey” T-shirts as part of their fundraising efforts. They are purple and white, because purple is the cystic fibrosis symbol color. In addition, a chicken and biscuit dinner is being planned for early 2014.
“Deep in her heart, Jessica doesn't want to rely on anyone. She's a free spirit. She does anything she can for herself,” said Sharp. “She would do this all on her own, but we want to show her she has family and friends who support her.”
Following her lung transplant, Jessica will remain in the hospital for one month. During the four months following her release, she'll need to have special housing near the hospital while she undergoes weekly lung biopsies and other testing. The fundraising will help cover living expenses as well.
“After the transplant, I'll have to take anti-rejection medicine to help my body adapt to the new lungs. The downfall is it will deplete my immune system even further, so I'll have to be extra careful during my recovery,” said Jessica. “I'll still take as much medicine as I did prior to the transplant, but different kinds. My pancreas still won't work, but I'll be able to breathe. I'll be able to run.”
To those who may be suffering from cystic fibrosis, or have a friend or family member living with the disorder, Jessica's message is clear.
“Trust in God and everything will be OK,” she said. “That's how I'm still alive today.”
Kaylee Harper is a contributing writer for Trib Total Media.