Teenager takes on rare illness
FAIRMONT — It’s not easy to be a teenager or young adult. You begin to leave the structured world of classrooms, parental oversight and childhood friendships. Meanwhile, your body is still growing, and you find your thoughts and beliefs challenged by people other than friends and family.
Throwing diseases into the mix only serves to complicate things, as many sick children and their parents can testify. But what do you do when your disease is something nobody’s ever heard of before?
That unfortunate question has, in recent years, been asked of local high school senior Matt Larson, 18, and his family.
Over the past two and a half years, Matt has suffered from granulomatosis with polyangitis, a rare blood vessel disease that affects an estimated 3 in 100,000 people in the United States. According to information provided by Matt’s mother, Lori, the condition causes the inflammation of blood vessels that primarily affect the respiratory tract and the kidneys. The disease is not contagious, hereditary or curable, and is fatal if not treated.
Matt, along with his father, Brad, and mother shared what the last few years have been like while dealing with an extraordinary burden”
“It started in October of 2014 with what we thought was a sinus infection,” Lori said. “Over the next few months, things seemed OK, and then at Christmas his sister was home from college, and he told her that he didn’t know what was wrong, but he didn’t feel like himself.”
“He was in sports, and we could notice that something was going on,” Brad said. “He just didn’t have the stamina.”
Other symptoms started to appear, including headaches, fatigue, light sensitivity and extreme nose bleeds.
“We had him checked for anemia, mono and other things, because we didn’t know what we were dealing with,” Lori stated. “They started treating him for migraines because his headaches were so intense. In the meantime, nobody was addressing the nosebleeds so we were trying to get him in to an ear, nose and throat specialist.”
“Matt’s dad happens to play basketball with Dr. Corey Welchlin, and one day he was sharing our concerns with him. The very next day, Dr. Welchlin got Matt in with ENT specialist Dr. Joshua Espelund. Ultimately, Dr. Espelund told us that Matt’s nose just shouldn’t look that way, and wanted us to do some additional bloodwork to rule out potentially serious diseases.”
She said Espelund discovered that Matt tested positive for an indicator to GPA.
“It was Dr. Espelund who set us on the correct path to an accurate diagnosis, and we credit the Center for Specialty Care for saving our son’s life,” Lori said.
However, as is common with rare diseases, the diagnosis did not go unchallenged.
“Even with the tentative diagnosis, we got some backlash from the current doctors he was seeing who did not believe he had an autoimmune disease,” she continued.
“It still took a couple more months, including ER visits and a hospital stay until we got in to see a pediatric ENT, Dr. Shelagh Cofer, with Mayo in Rochester. She recognized the seriousness of the disease, and said we need to be seen by a specialist and begin treatment immediately.”
The Larson family also credits Dr. Cofer with saving Matt’s life.
From there, Matt began to see Dr. Ulrich Specks, a world expert in GPA, and within a week he began infusion treatments that began to stop the damage that was being done to his body, and eventually help him to begin feeling better. Matt now receives infusions of a medication known as Rituxan every four months, and will likely continue to do so through his freshman year of college.
Meanwhile, Matt saw his time at with friends, school and even work affected.
“He missed the last two months of his sophomore year, and his junior year was tough,” Lori said. “He also couldn’t work at his job.”
Matt has since returned school, as well as work.
“We’re super proud of him,” Lori continued, with a crack in her voice. “Probably one of the hardest things is to watch your child become isolated from friends and things that he used to be able to do. But he doesn’t feel sorry for himself, and he started to focus on the things he could do, rather than let the disease define him.”
“I can’t say enough about Tim Clements and the team at Shopko,” she stated. “They worked with Matt during the good times and bad, and are truly amazing.”
Lori went on to say the family is also thankful for the support of Fairmont High School staff — Mrs. Niss, Mrs. Kallenbach, and his teachers, especially Mrs. Schweiger, — who have all been supportive of Matt.
“We are so thankful for the support of our family, friends and co-workers,” Lori continued, “including Dr. Slama, who manages Matt’s care locally, and Darla Lytle and the nurses in the infusion/chemotherapy center.”
As for Matt, he says the disease has helped him discover a new purpose for his life.
“It helped me decide what I want to do when I grow up,” he said. “I’m a math and science kind of guy, and was more into engineering, but after I got sick, I became interested in the medical field, so now I’m looking at medical laboratory sciences at South Dakota State.”
From there, he hopes to pursue a master’s degree in research and development.
“The dream of dreams would be to cure my own disease,” he said.
Feb. 28 is Rare Disease Day, and the Larson family encourages people to keep seeking answers when they know something just isn’t right with themselves or a loved one, because they could save a life.
“We are more aware now than ever before that life is precious, and far too short,” Lori said. “So we try to appreciate each other a little more every day, and not get bogged down with the small stuff.”