Persistence in Pursuit of a Dream

Kathleen and her mother share dedication for a better life with Common Variable Immunodeficiency

From the beginning, Kathleen has been up for a challenge. The little girl who began learning to play the piano when she was three and played collegiate tennis also has her mind set on becoming an airline pilot. Her focus has been remarkable, and it has been matched by her sense of gratitude for the chances she has received. Kathleen, now 22 years old and enrolled at the University of North Dakota, Grand Forks has kept that drive despite a lifelong battle with Common Variable Immunodeficiency that often threatens to disrupt everything.

“When I was born, I was getting sick a lot, with infections and had a lot of problems, and my mom was too,” explained Kathleen. Her mother, Susan, thought she might share a genetic issue with her young daughter, but none of the practitioners they saw recognized anything alarming. Eventually, an ear nose and throat doctor tested for Common Variable Immunodeficiency (CVID) when Kathleen was around three years old, and the results came back positive for both mother and child.

CVID is an immune deficiency characterized by impaired antibody production that leads to increased infections, autoimmune disorders, gastrointestinal complications, and an elevated risk of malignant tumors. Only about 30% of cases have identified genetic causes, leaving many still unknown. For Kathleen, it filled the first few years of her life with disruptions and illnesses that left her exhausted and not always able to keep up with her friends.

“For about seven years, until the middle of elementary school, I had serious sinus infections every winter,” she remembers. “They basically told my mom that it would just be that way for the rest of my life, and they didn’t know what to do. I was so sick with various infections and complications. Between sickness and traveling to multiple medical specialists, requiring 2-3 hrs round trip I was missing 6-7 weeks of school per year” By the 3rd grade she had undergone eight ENT surgeries.

As a child, one activity Kathleen was able to take part in was piano lessons. When she was just three, around the time she was diagnosed with CVID, Kathleen began playing, and she has never stopped. “It’s a lifelong skill that I can take with me,” she said with a smile. “I’m glad my parents didn’t let me quit.”

Dedicating herself to the piano, Kathleen entered competitions in high school and college. In March 2025, she won the University of North Dakota concerto competition and took second place with the Fargo Moorhead Symphony Competition. In high school, she received scholarships from the American Guild of Organists to fund private organ lessons. She also served as church organist for two years.  Aside from competitions, Kathleen currently works as an organist at local churches near her home and school.

Indeed, there has been no quit in Kathleen or her parents. Susan, who is also a practicing physician, pursued every angle in search of better treatment for herself and her daughter.

“My medical specialty is in a very different area [than CVID],” Susan explained. “So my learning curve was a little steep, and needless to say, we’ve learned about this disease the hard way. But the moral of the story is that I just persisted. I refused to take no for an answer and I just kept going.”

When Kathleen was in fourth grade, that persistence led Susan and Kathleen to Dr. Steven M. Holland, the Director of the Division of Intramural Research at the National Institute of Allergy and Infectious Disease (NIAID).

“He changed my life,” Kathleen was quick to say. She remembered one of their first visits to NIH when Dr. Holland elected to take her off the subcutaneous IVIG infusions that she had been getting since her diagnosis more than seven years earlier. “He wanted to see if I would be OK, because I was doing a little bit better than a lot of kids with this disease.”

So Dr. Holland prescribed a preventative antibiotic, azithromycin and the effect was immediate. For more than a decade now, Kathleen has taken that pill every single day.

“It changed my life almost overnight,” she said. “I have never had another PICC line*. I’ve never had another serious sinus infection. I was able to start playing tennis. And I was able to start thinking about the future and going to school full time.”

More than 13 years since her first visit, Kathleen doesn’t remember much about it. But she does remember the feeling of walking in the doors at The Children’s Inn.

“I loved the playground,” she smiled. “I would go out there with all of my free time. I would ride the bikes, and I had to see Zilly every time. I really thought it was so awesome that I could just go into the pantry and there would be so much food there.”

Kathleen particularly enjoyed meal times, as it gave her a chance to meet other kids going through similar medical journeys, including some with CVID. “It has been nice to go there, knowing that you’re sick and you’re not like other people. But having dinner and getting to know these other families who are going through it, that’s such a powerful experience. I would come to The Children’s Inn and feel like I’m not alone.”

As she approached the age of 10, Kathleen was experiencing a number of milestones in her young life. Most important was the beginning of her care with Dr. Holland. She enjoyed her tennis lessons, advancing in her skills to play competitively on her school team grades 7-12 and into college. At around the same time, she also discovered what she felt was her true calling.

“My dream is to be an airline pilot,” Kathleen explained. When she was in third grade, her parents brought her to International Girls in Aviation Day in Flying Cloud, Minnesota, just outside Minneapolis and about two hours from her family’s current home in Rochester. There, she saw how many ways women could be involved in the aviation field and she got to go up in a discovery flight. The experience stuck with her.

By high school, Kathleen spent a week at ACE Camp based out of the Minneapolis-St. Paul International Airport. “That was the best week of my entire life,” she laughed. She recalled not only riding in airplanes, helicopters, and gliders, but also learning about the inner workings of the airport. “It was an amazing experience and it changed my entire perspective on my life. After that week, I felt like that was what I really wanted to do.”

With the same devotion and determination that led her mother to the National Institutes of Health, Kathleen has worked to pursue her dream of becoming a pilot. She is now a senior at the University of North Dakota, Grand Forks, which is renowned for its Department of Aerospace. She is double majoring in commercial aviation and aviation safety. At UND, she has now earned her private pilot’s license, instrument rating, commercial pilots license, multi engine rating and flight instructor certificate. She has now put in nearly 300 hours in the air over the last two-and-a-half years, flying three or four times a week to practice areas – blocks of air space designated for flight training – outside Grand Forks.

Her pilot training is hard work and requires intense discipline, but Kathleen has managed to incorporate some thrilling fun too. With her collegiate team, one of the few in the country, Kathleen also flies aerobatics – air show flying that has left her adept at all sorts of loops, rolls, and spins through the air. The UND team won first place at the 2025 U.S. Aerobatic national championship. Individually, she placed second overall in her primary category and won the Canadian nationals. She counts herself among the roughly 2% of pilots who also are aerobatics pilots, though her primary focus is on less stomach-churning flights.

In 2025 Kathleen was awarded scholarships for her student achievement from the Minnesota Aviation Hall of Fame, the Minnesota Pilots Association and UND.

Her own stomach has churned a lot less under the care of Dr. Holland. “All pilots need a medical certificate,” she explained, “so I had to go through that process through the Mayo Clinic near my home. These certificates get handled by the FAA, and it was sent back to me with concerns about my disease and needing further clarification.”

Naturally, that left Kathleen worried for the viability of her dream. If a pilot can’t get medical clearance, they can’t be a pilot, period. But the Mayo Clinic FAA examiner collaborated with Dr. Holland and the doctors near home. Dr. Holland writes annual letters to her medical officer, updating them on Kathleen’s status and fitness for her certificate.

Kathleen expects to live the rest of her life with her CVID, and still experiences some minor complications as a result of it, such as infections and reactive arthritis. But she knows that her experience at NIH has given her a fresh outlook on life.

Her mother’s dedication in pursuing treatments also had a profound effect on Kathleen, not just in her physical well-being but in her mental fortitude. Since she was a precocious three-year-old piano player, Kathleen has dedicated herself to being the best that she could be, whether that was at piano, tennis, flying, or maintaining her health. And she approaches each day with gratitude for the people and places that got her to this point.

“The Children’s Inn was so beneficial for me, getting that perspective on the things other families were going through. And I know that for me, without NIH I would not have been able to do what I’ve done with my life. It’s all thanks to Dr. Holland and the NIH.”

*a PICC line is an intravenous line providing long term access for treatments, blood draws, and nutrition in order to avoid repeated needle sticks.