Matt, Mary and Marathons: Mom & Son Fight for a Cure

By Sarah Mortensen

Mary Pozsgai remembers holding her best friend Annie’s hand as she took her last breath one day after turning 18. In 1983, the average lifespan of someone with cystic fibrosis (CF) was early teens, but “Annie’s determination to live to be an adult helped her beat the odds,” says Mary. “For a very long time I [asked] . . . Why Annie? Why was this amazing friend brought into my life just so I could watch her die?” The answer to Mary’s question came ten years later when Mary’s own son was diagnosed with the same devastating disease. “Until that point, I never even knew I carried the defective gene that causes CF.”

A Deadly Diagnosis

Cystic fibrosis is a degenerative genetic disease that affects multiple systems in the body, but Mary says the damage done to the lungs is the most life-threatening part for the majority of those living with CF. The defective genes cause a buildup of mucus to accumulate in the lungs, reducing their function. The excess mucus traps bacteria and other pathogens which invariably lead to lung infections and chronic lung damage. When Mary’s son, Matt, was diagnosed at just four months old, she knew what lay in his future. However, she refused to allow herself to go down the path of negativity. “I am a firm believer in the power of positive thinking. I was never in denial about what this disease was capable of doing, [I’d] already lived through that once, but I never allowed my thoughts to go to preparing for the worst because I felt like that could turn the trajectory of our fight in that direction. I kept my focus on fighting to keep him alive, and I kept my hope on the power of science.” continued on next page continued from previous page

Treatments and therapies began immediately after Matt’s diagnosis. As an infant and toddler, he was small and had problems with digestion, since CF also affects the pancreas and salt absorption. Doernbecher Children’s Hospital in Portland houses our region’s cystic fibrosis clinic which specializes in the latest treatments and medications. The comprehensive team consists of doctors, nurses, dieticians, pharmacists, physical therapists, respiratory therapists and even social workers. Mary had seen the treatments available to Annie, but ten years later, there were more options for her baby boy. “That not only gave me purpose to keep pushing that science forward, it also gave me the hope I needed to begin my new journey with cystic fibrosis,” she shares.

Antibiotics, enzymes, chest therapy and pulmonary function tests helped to slow and monitor the progress of Matt’s disease while the Pozsgais waited and prayed for more medical advancements.

In third grade, and again in seventh grade, Matt spent weeks at a time in the hospital, as specialists worked to clear out as much sticky mucus as possible. Things continued to get worse as Matt prepared to start high school. Starting in August 2009, the summer before his freshman year, and for 10 years afterward, “Matt was in and out of the hospital every 3-4 months for a minimum of 2 weeks at a time, a total of 38 admits,” his mother recalls. “In that time he also did three rounds of long term IV antibiotics at home, one of those lasting 14 straight months of around-the-clock IVs.” Doernbecher became a home away from home, and the medical team became a second family. “When Matt was in and out of the hospital all those years, our family lived in two dimensions,” recalls Mary. “We had our home life when he was well enough to be home. When he was admitted, I would take off work to stay with him. Matt’s younger siblings would go to school and then their father would bring them to the hospital to have dinner, do homework, spend family time and then go back home.” It was busy and stress-filled, but the family made memories together at the hospital, supporting Matt and each other.

Advocacy and Advancements

Shortly after Matt’s diagnosis, the Pozsgais connected with the Oregon and Southwest Washington chapter of the Cystic Fibrosis Foundation (CFF) which works to secure more funding for research and finding a cure. “Annie was my mentor to this disease, and I believe she was Matt’s guardian angel. She not only taught me about CF, but she also gave me the vision to see just how important CF awareness and funding science was.” Mary brought continued on page 14 the annual fundraiser walk Great Strides to Vancouver in 2000. This year, the event will be held on May 13 at Esther Short Park with the goal of raising $55,000 for CFF. “The advocacy of the CFF, and the funding of the people who support their mission has astronomically changed the lives of people living with CF,” explains Mary. “In the 1950s when the CFF was founded, kids with CF rarely lived to see kindergarten. Now, due directly to the CFF, there are new medications to treat the symptoms of CF.” For some gene mutations, medications have even been developed that can treat the underlying cause of the disease.

New treatments did become available by the time Matt reached middle school, which brought more hope to his family. In addition to working with the local chapter of CFF, the Pozsgais have traveled to Washington D.C. to meet with members of congress and participate in CFF’s annual March on the Hill event. Mary and her daughter, (Matt’s sister) Mckenna, have spoken on Capitol Hill to raise awareness and advocate for all people living with CF.

Wishing for a Cure

In middle school, Matt had played on the basketball team and was relatively healthy thanks to new maintenance treatments. But slowly, his lung function decreased and by 9th grade he could no longer keep up with his friends to play sports or even just goof off in the backyard with his younger brother and sister. Running the length of his house was his limit and a serious struggle. Every four months, he would be readmitted for two weeks at a time. During this time, Matt had been nominated for a wish from MakeA-Wish Foundation and originally “wished” to meet his idol Steve Irwin, the Crocodile Hunter. Unfortunately, that wish did not come true. Instead, at age 16, Make-A-Wish granted Matt his own “man cave” in his garage where he could hang out with friends, play video games and drink sodas from the “bar” in what looked like a miniature Buffalo Wild Wings. It was his own space where he could just be a teen and not think about his disease.

As a senior, Matt was nominated by his cousin to compete in the Mr. Skyview Pageant at Skyview High School, a sort of parody on beauty pageants that raises money for charity. Matt accepted the challenge, representing Make-A-Wish, who had previously helped him. Even as he was sick himself, he danced in multiple performances and won for his fundraising efforts. As Mary thinks back on those days, Matt’s positive attitude and living life to the fullest as he faced exponential health challenges is what makes her most proud. “I am most proud of his strength and courage. It is truly hard to see from the outside looking in just what it means to live with CF, especially when it’s someone like Matt who only lets you see that infectious, sparkling smile he wears. To face overwhelming daily treatment burden, the constant derailing of important moments, the uncertainty of each day, having to face your own mortality while still a child. Pushing through the pain and doing all that is required of you no matter how sick you feel or how tired you are. Daily handfuls of pills, hours of inhaled medication and chest physiotherapy, nightly tube feeds, IV antibiotics, countless hospital stays, PICC Lines, Ports, G-tubes, CAT Scans, X-rays, blood draws—all with no promises, just the hope that a cure will be found before it’s too late. This was Matt’s world for most of his childhood and early adult life 24/7, 365 days a year.”

A Game Changer

By age 25, Matt ’s lungs were functioning at about 50% and “talks were trending toward lung transplant in his future,” says his mom. Then in October 2019, a new drug became available called Trikafta. Matt was able to take the drug one month after the FDA’s approval and within hours of his first dose, he noticed a difference. The drug works on a cellular level, helping the body to dislodge and expel the thickened mucus. He quickly regained 25% of his lung function and gained 25-30 pounds. While the drug was still new and long-term results uncertain, Matt was grateful and feeling great. But, just as his world began to open up, the COVID-19 pandemic struck, and the outside world shut down.

With Matt being extremely high-risk, his family took extra precautions during the pandemic. Matt’s father, Steve, and brother, Adam, are both firefighters who still went to work every day. Before the vaccine became available, Steve lived in the family’s trailer in continued on next page continued from previous page the driveway and Adam didn’t come home to visit. Mckenna, who was still living at home, dropped out of her college program as a respiratory therapist to limit her own exposure. No one wanted to risk the possibility of infecting Matt just as he was starting to feel better. Mary still cooked family meals and they gathered at a distance outside in the backyard to spend time together. Matt became especially grateful for the man cave where he could still communicate with friends through online video games. “In order to keep Matt as safe as possible, our family had to fracture,” says Mary. “As far as isolating, social distancing and wearing masks, we were way ahead of the game. Those were already a normal part of life for anyone living with CF.”

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Ready to Run

After a year of isolation and months of sitting, Matt decided to try something new. “Originally, I began running after I started Trikafta just for the mere fact that I could,” he says. “I hadn’t been able to run for almost my entire life at that point.” Matt began with very short distances, building up his stamina from one mile to four, each time feeling a runner’s high and gaining confidence. “I was running those distances a few times every week. That routine lasted about six months. At the beginning of 2022, I ran my first 7.5-mile run, then two days later I ran a 10-miler, which blew my mind. I immediately signed up for my first half marathon, which I ran a month later. That’s what started the journey that I’m on now.” continued on page 16 continued from page 15

One of Matt’s nurses, Jessica, at Doernbecher was a runner herself and encouraged Matt to keep pushing his limits. “After my first half marathon, Jess and I were geeking out together about distance running and the idea of me running a full marathon. Jess asked if I’d ever heard of the World Majors, which I hadn’t. They are a series of the top six marathons in the world—Chicago, Boston, New York City, London, Berlin and Tokyo. A lot of runners spend decades trying to complete all six races,” explains Matt. The hardest part is qualifying for these competitive races; however, if you don’t have a fast marathon time, you can be chosen as a sponsored charity runner. “That immediately intrigued me,” Matt continues, “since I love a challenge that most people perceive as unrealistic or unattainable. It also just so happened that the application process had just opened for charity runners for the Chicago marathon, and the CFF was one of those eligible charities. [Jessica and I] put in our applications and both got in.”

Chicago 2022 should had been Matt’s first full marathon. But, while in Chicago, Matt began to feel sick. “I got COVID the day before the race and had to drop out. I was crushed obviously . . . I had put in all that work in training and raised all that money just to get sick and not be able to run. I really wanted to make up those miles for the people that selflessly donated to my fundraiser, and I really wanted to complete that goal I trained so hard for. I was disappointed that I wouldn’t have that significance of running a World Major as my first marathon.” Thankfully, Matt’s COVID infection was minor, likely thanks to Trikafta. While waiting in the hotel room, he thought about how to continue his goal and honor those who had donated to CFF, so he got online and mapped out his own marathon. “I wanted my first marathon to be more significant than just the [number] of miles I was running. The idea of running to Doernbecher just felt right to me. It felt like the perfect way to close the book on that part of my life. It felt symbolic of the transition to this new journey that I’m on to run from my home to the front doors of the hospital where I spent the majority of my life when I was sick. Not only was it a full circle moment for me, it was also a full circle moment for my care team that was waiting to cheer me on at the finish line. That was the moment where I felt like I officially beat CF.”

Matt ran his personal marathon on October 28, 2022, his 28th birthday. His sister Mckenna put together a highlight reel of this moment where his care team was waiting for him and posted it on Instagram. Matt will be going back to Chicago this October and has also been invited to participate in the New York City Marathon in November. His new goal is to be the first person with CF to run all six World Major Marathons. He also plans on running a 50-mile ultra-marathon in July.

Matt has made it farther than he ever imagined, in more ways than one, but his fight against CF is not over yet. “I hope that sharing my story and my journey while also advocating for the CF community will further awareness and funds for the CFF so that everyone with CF has the opportunity to experience what I’ve been blessed to experience. There’s still 10% of the CF population that doesn’t have access to medication like Trikafta because it’s not compatible with their gene mutations. That is who I’m fighting for now.”

Sarah Mortensen holds a bachelor’s degree in marriage and family studies and works for Vancouver Public Schools as a paraeducator, in addition to her role as associate editor of Vancouver Family Magazine. When Sarah is not reading to her kids or students, she is probably in her backyard taking care of her garden. She also enjoys hiking, hot chocolate and dressing up for Halloween. She lives in Vancouver with her husband, son, and daughter.

Left: Matt Pozsgai smiles while undergoing tests and treatments in the hospital.

Middle: Matt Pozsgai poses with running buddy.

Right: Matt Pozsgai shows off his Big Foot Fun Run medal at the finish line. Inset: Matt Pozsgai smiles after completing his own personal marathon to Doernbecher Children's Hospital.

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