Newark Charter School senior lives life to the fullest, despite Cystic fibrosisDec 29, 2020 04:29PM ● By Tricia Hoadley
When Newark Charter High School senior Nicole Gill filled out her college application last fall, she included an essay about challenges she had experienced. She chose to write about the 24 hours after her brother Andre got the call that he was poised for a lung transplant to remedy his cystic fibrosis.
Not about her academics, including five advanced placement courses.
Not about her extracurriculars, which keep her at Newark Charter after classes almost every day.
Not about her singing and dancing, her church, her parents Julian and Leslie, her other brother Landon or the dogs, Nala, Daisy and Roo, who share the family’s Newark home.
Not about her cystic fibrosis, hospitalizations, missed school days and two-hour daily regimen to combat the condition. Cystic fibrosis is something she has been living with her entire life. No excuses.
“I’m always busy. I keep going because it’s something I enjoy,” she said. “To put it bluntly, [cystic fibrosis] kind of sucks. But I’ve been coping with it since I was a baby, and the alternatives are worse. I want to keep up with everything because it takes 10 times as much to make up things I missed.”
“She is the toughest kid I’ve ever met,” Ryan Mitchell, the school’s director of college counseling, wrote in his college recommendation letter. “I’ve listened to Nicole describe her experiences as a high school student with a debilitating disease and held back tears, half-expecting her to burst into them herself given the nature of her constant toiling, but she never does.”
Academically, she is in the “top 2 percent of a particularly ambitious class,” according to Mitchell, who calls her relentless in her persistence, humble and influential.
“Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time,” the Cystic Fibrosis Foundation says on its website. And “in the pancreas, the buildup of mucus prevents the release of digestive enzymes that help the body absorb food and key nutrients, resulting in malnutrition and poor growth.”
Her lung problems show up in coughing every five seconds or so and her diminished lung function, as low as 44 percent and 65 percent on her most recent test. A 40 percent figure is when people are put on the list for a transplant, but Nicole hopes to avoid that operation. “My goal is not to get a transplant, after watching what my brother went through. It’s nothing I want to repeat.”
Andre, who’s 15, had the transplant in early 2019 and missed almost a half-year of school as he recuperated at home, the quarantine advised since his immune system was suppressed so he could accept the transplant. Plus, those with cystic fibrosis already should “minimize contact with germs, since the mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure and other complications,” the foundation says. His lung function is now above 100 percent, but post-operative complications include the onset of diabetes.
“She shares my pain,” Andre said. “It’s really nice to bond with someone who is going through the same issues as you. It’s a very good outlet.”
Nicole’s cystic fibrosis was diagnosed when she was four months old and still only eight pounds. “It was a rough four months,” recalled her mother, Leslie. “I was in tears. Something was really wrong.”
That’s not just a mother talking but also a nurse, who now works at Exceptional Care for Children in Newark. “Being a nurse has helped me understand what’s going on in their bodies and have them keep up with their treatment regimens,” she said. “Cystic fibrosis affects every part of the body, except the brain, but especially the lungs. It’s too easy to say ‘they’re fine’ and skip their exercises. But I knew it was important to have them as healthy as possible.”
Over her life, Nicole has been hospitalized dozens of times, even with all her breathing exercises and 30 pills a day. The most promising is Trikafta, approved last October as the first triple combination therapy for cystic fibrosis. “I haven’t been sick since,” said Nicole, who started it in November. “It’s amazing.”
Another medication called Creon helps her digest fat. Without it, that fat gives her stomachaches. She follows a recommend diet that’s high in calories and high in fat (her favorite food is mashed potatoes, and the dinner for her 18th birthday starred shepherd’s pie), yet cystic fibrosis has still stunted her growth. “Cystic fibrosis kids are a lot smaller,” she said. She’s 4-foot-9 and 100 pounds, too small for the Hyundai Elantra that’s her car, so she prefers her father’s Kia Optima.
Appreciation of the wonders of medicine is partly inspiring her career. She’s always loved math and science and plans to attend the University of Delaware, studying in the honors program and majoring in chemical engineering, eventually moving into “research on medicine for people like me.”
At Newark Charter, she has been involved in multiple activities for all four years. That includes competing in the Science Olympiad; participating in the Technology Student Association, for three years, she wrote and produced children’s stories, and this year she’s designing a board game; performing in the school musical, this year as dance captain; and dancing in the Patriots Dance Team, which performs at basketball games and pep rallies. As a sophomore, she attended the Governor’s School for Excellence, and this year she is member of the National Honor Society.
Outside school, she has been studying dance since she was 2, covering ballet, jazz, hiphop and lyrical, and she now takes classes twice a week at Encore Dance Academy on Kirkwood Highway. Last year, she stopped acting classes. She’s also a member of the Imagination Players, a youth troupe that she said spreads cheer mostly through singing at nursing homes, day cares and the like.
That said, there are very rare times when she cannot muster the energy, she said, noting that last year she missed a dance recital and the family’s annual trip to England to visit her father’s relatives.
Nicole and Andre in February were named Shining Stars at a February Cystic Fibrosis Foundation fundraiser. They “strive to live life to the fullest” and demonstrate “strength, spunk and appreciation for life as they battle cystic fibrosis on a daily basis.”
Photos courtesy of Leslie Gill