Jaelyn Cooper walked across the stage wearing her vibrant blue robe and graduation cap. Draped around her neck were tassels and sashes denoting her various honors—Honor Graduate, Student of Distinction, National Honor Society, Beta Club. Her mother, Dianna Mathis, cheered for her in the audience as Jaelyn received her diploma.

The mother and daughter went through a lot to get to that milestone this past May. Jaelyn lives with cystic fibrosis, Crohn’s disease and diabetes. Her normal day begins and ends with 30-40 minute vibrating vest treatments and various inhalers; she takes an assortment of vitamins and enzymes to help her digest food and absorb nutrients. While she sleeps, a gastronomy feeding tube (GT button) supplies her with nourishment.

But Jaelyn isn’t just her diagnoses; she’s also an honor graduate from The Baptist Preparatory School (formerly named Arkansas Baptist Schools), and now a freshman at University of Central Arkansas where she’s deciding between a major in communications or education. She’s a 19-year-old who listens to Drake and gets excited for new seasons of “Grey’s Anatomy” and “Empire.” And currently, she’s healthy, too—which is an accomplishment on its own.

Diagnosis

Dianna Mathis now knows the symptoms of cystic fibrosis—salty skin, frequent lung infections like pneumonia and bronchitis, poor growth or weight gain, difficulty with bowel movements—but when her daughter was an infant, she had barely heard of CF. It’s no surprise, as the life-threatening, genetic disease isn’t common—according to the Cystic Fibrosis Foundation, there are approximately 30,000 people in the United States living with CF.

From birth, Jaelyn had obvious troubles. She was back and forth in the hospital—Jaelyn couldn’t keep her formula down and wasn’t gaining weight, and she was sick with pneumonia and sweating profusely. Dianna says her doctor was baffled: “He had Jaelyn’s chart and a medical book. He said, ‘I just don’t know what this is. I can’t help you. You have to find another doctor.’ And he closed the book and got up and left the room.”

Dianna demanded to see another doctor in the clinic. But the real break-through came at an appointment later that day with Jaelyn’s gastroenterologist, Dr. Helen Casteel. Dianna explained the situation and her feelings of hopelessness. “She said, ‘Dianna, do not give up hope. Do not give up on me.’”

Dianna waited for hours until finally Dr. Casteel returned and told her to take Jaelyn to the hospital immediately. “She said, ‘I think—according to a colleague that I just got off the phone with—that Jaelyn has cystic fibrosis.’”

The doctors were stunned, because cystic fibrosis is not common in African Americans: “They had run every test except that one. So when we were admitted into the hospital and test came back positive, the doctor said ‘run it again. I want to make sure, so we can know how to treat her.’”

Treatment

Dianna and Jaelyn spent a month at Arkansas Children’s Hospital with the “excellent cystic fibrosis team.” Jaelyn was getting healthier and Dianna was learning how to care for a child with CF. The disease causes a buildup of mucus in the lungs, which can cause clogged airways and infections. This can lead to extensive lung damage and respiratory failure, so an important aspect of treatment is preventing mucus from accumulating. “When she was about 3 or 4 years old, they came out with the vest that helps shake the mucus off the lungs. And she inhales Pulmozyme, which helps break up the mucus.”

It’s a treatment that Jaelyn continues today. Vest treatments take about 30 minutes in the morning and evening; when she’s sick, the treatments can increase to four or five times a day. And sickness is a constant threat that requires rounds of antibiotics or hospital stays for serious infections.

At least twice a day, Jaelyn combats the symptoms of cystic fibrosis with vest and inhaler treatments.

Complications

With the cystic fibrosis under careful control, Jaelyn was thriving in elementary school—until she landed in the emergency room with severe stomach pain. At first, the doctors and Dianna thought the pain was another symptom of CF, which also affects the pancreas and the release of digestive enzymes that help break down food and absorb nutrients.

“Her looks started changing and her hair started falling out. She started losing weight. I knew she was getting sick. But it wasn’t her lungs,” Dianna says. Jaelyn was diagnosed with diabetes and Crohn’s disease during her fourth grade school year. “She stayed out of school the whole year. We had to train with the diabetes how to get insulin and how to count calories. But the Crohn’s was my biggest nightmare,” Dianna says because of the debilitating pain it caused.

The Crohn’s disease flared up again right after Jaelyn started middle school, and put her back in the hospital for two months. She was home bound from the sixth through eighth grades, but the silver lining was her teacher from Maumelle Middle School, Mrs. Alice Robertson: “She was the best and made sure Jaelyn got all of the education that she could get,” says Dianna.

Success

When the time came for Jaelyn to start high school, Dianna toured several public and private options and had to consider many factors—including the age of the school building, which can affect air quality. “When I went to Arkansas Baptist High School [now called The Baptist Preparatory School], it was like a door opened for Jaelyn,” she says. “The superintendent’s wife, Mrs. Bennett, I told her my problems and that I was looking for a smaller, clean environment and understanding.”

Dianna and Jaelyn say that understanding is exactly what they found at Baptist Prep. She made friends and was able to participate in band and volleyball. When Jaelyn’s Crohn’s disease flared up again in 10th grade, her school showed support during her many hospital stays—the longest of which was two months. “Her counselor really accommodated Jaelyn. She came up there so many days and prayed over Jaelyn. Even the classmates sent bags full of cards. On Valentine’s Day, the counselors sent the high school choir to sing.”

Transition

What’s different about college life? “Everything!” says Jaelyn, who is now a freshman at the University of Central Arkansas. “Not being around your family every day; not in school 7 hours a day; and I live there, so it’s an adjustment in time management.”

Jaelyn also knows the importance of being responsible for her daily treatments and medications. But sending a teen with special medical needs off to college can be a difficult adjustment for parents, too. “It’s a big worry,” says Jaelyn’s mother, Dianna. “You have to have support from the child’s physician and talk to them—what do they think is best?”

Parents can work with their child’s physicians and the school’s disability resource center to make sure accommodations are met—such as providing a private room, giving a student the ability to take online classes, altering assignment due dates if illness causes absences, etc. In Jaelyn’s case, Dianna worked tirelessly to ensure that her daughter would be housed in a newer dorm, as older buildings can affect her breathing.

Have your physician write letters explaining your child’s diagnosis and special needs. When accommodations are granted by the school, “have them send confirmation emails and confirmation letters,” says Dianna. Lastly, stay educated on which accommodations must be met under the law, and report violations to the U.S. Department of Health & Human Services’ Office for Civil Rights.

Jaelyn says she never doubted that she would graduate and go on college, and Dianna says all of those who helped Jaelyn along the way are proud of her success. “She’s an inspiration to other children,” says Dianna. “Don’t give up. You can make it.”

13th Annual Cystic Fibrosis Family Resource Day

Saturday, Nov. 14, 9 a.m.-2 p.m.; Arkansas Children’s Hospital, Children’s Hall

Families, teachers and caregivers can learn more about cystic fibrosis at this annual event that includes exhibits, door prizes, information on ACH’s current research and more. The featured speaker will be Lisa Greene, a mother of two children with CF. Greene will give families tools and tips for raising healthy children and preparing them for independence. Due to infection control, people with CF cannot attend, but may view speaker sessions during a live video-streaming online. Entry to the event is free; sign up by contacting Jennifer Steck at (501) 364-1006, PedsPulmonary@UAMS.edu.