Homewood teen finds support in fight ‘against my body’
Josie Nordman never was one to sit around and wait. And since the Homewood teen has no idea when she will get a call saying donated lungs have been found for her, she’s busy trying to live a normal college life at Northwestern University in Evanston.
Nordman, 19, was diagnosed with cystic fibrosis when she was 4 months old, and life was “pretty normal” until high school, she said. In recent months, however, Josie’s condition has rapidly deteriorated, requiring her to rely on supplied oxygen 24 hours a day.
Cystic fibrosis is a genetic chronic disorder that causes the body to produce unusually thick, sticky mucus that clogs the lungs, leading to life-threatening infections, and obstructs the pancreas, interfering with digestion.
Nordman, who was in the top 10 in her Homewood-Flossmoor High School Class of 2011 and now is a sophomore at Northwestern, said even walking has become “really, really hard.” She feels like she’s being stabbed in the chest with every deep breath she takes.
“It’s real hard to leave my apartment. It’s so difficult to go to school, but this is where I want to be,” the theater major said.
“It would be so much easier to go home, have my parents take care of me and sleep all day. I want to say I tried really hard to stay,” Nordman said. “I’m very determined to beat this disease in whatever way I can. I’m very competitive, and now I’m fighting against my body.”
She’s reduced her class load from four to two classes.
An avid equestrian and member of Northwestern’s equestrian team, she no longer can ride. But she still is hoping to produce an ancient Greek play, “Ecclesiazusae,” and adapt it into a “fun” musical in 16 weeks.
In May, at the end of her freshman year, her lung capacity was 50 percent, her mother Nicolle Nordman said. Over the summer, Josie went downhill fast, prompting doctors to put her on a waiting list for a double lung transplant.
When she began school in the fall, her lung capacity was 30 percent. Today, it is 16 percent to 18 percent, and she’s been hospitalized twice since classes resumed in January.
The average wait time for a lung transplant is six months, her mother said, but a call could come at any time, or not in time.
The donated lungs need to match Josie’s blood type and her small stature — she’s 4 foot 9.
“If I could give her my lung, I would,” her mother said. “I can’t stand to see her suffer.”
Nicolle worries that she is not spending enough time with her three younger children and that she’s not close enough to tend to Josie’s every need.
“This has taken a huge toll on our family. We are essentially living a nightmare,” she said.
NU ‘family’ full of support
Nicolle has been comforted by the outpouring of support Josie has received from her Northwestern family, who have “certainly embraced her,” Nicolle said.
“I feel that her NU family is just as important as we are to her,” she said. “If she were at home, she would be bored. She’s a very smart girl who needs to be engaged in doing things.”
Josie’s Chi Omega sorority sisters, her theater family and the NU community have organized efforts, creating schedules to drive her to and from classes, bring her food and just hang out with her, Josie said.
“Everyone has been so incredibly supportive. That is the only thing keeping me here,” she said.
Besides taking care of Josie’s daily needs, her Northwestern family also have been raising funds to help her Homewood family’s financial needs in defraying the cost of the $750,000 transplant. They have a goal of raising $75,000 — the cost not covered by insurance.
One of Josie’s former theater teachers recently launched a website — www.indiegogo.com/projects/312551 — and already has raised more than $26,000.
There have been numerous smaller, but no less significant, efforts as well. Her sorority sisters and equestrian team members are selling “Support Josie” bracelets and raised more than $1,000 in one day. Other friends have hosted Pampered Chef, Tastefully Simple and jewelry parties. Theater friends staged a reading of her favorite play, “As You Like It,” and students she doesn’t know personally have found ways to raise money. Restaurants, including Just Turkey in Homewood, are planning to donate a percentage of sales to her cause.
“It’s absolutely amazing,” Josie said. “It’s a big burden off my parents’ shoulders.”
While fundraising efforts have been a big financial relief, her mother said, “It is really their support that relieves me the most. People are doing everything for her.”
Nicolle also wants people to be aware of the need for organ donations.
“You can’t take them with you,” she said.
Josie said she is “absolutely” looking forward to her lung transplant. She said she is eager to be able to “walk alone and breathe without hurting.”