When Erin and Paul Kvittem decided to start a family, they were aware of the remote possibility of having a child with medical issues, just like any other young couple. But like any other young couple, they thought, “Yeah, it could happen, but it’s never going to happen to me,” Erin Kvittem recalls. And for the first 11 months of young Nathan Kvittem’s life, he was a healthy baby boy.
But when the usually rambunctious Nathan wasn’t eating and seemed to be extremely fatigued, they took him to the emergency room. Blood tests came back showing idiopathic thrombocytopenic purpura (ITP), a condition that causes blood platelet levels to drop. Although it seemed alarming, the doctors told the Kvittems that 90 percent of people get this and it’s not a big deal. So they gave Nathan some medications and sent him home. Two months later he was sick again—very sick—with hemolytic anemia, a condition where red blood cell levels go down.
But this time doctors weren’t as reassuring. The doctors told the Kvittems Nathan’s body was shutting down; things were dire. “He wasn’t getting any oxygen to his body and his organs, so his body just stopped working,” Erin says. “His heart rate was so high that they said he could have a heart attack or a stroke at any moment.”
So at 13 months old, Nathan got his first blood transfusion. “His red blood cells went down so low that if we didn’t OK a blood transfusion, [the doctors] would have gotten court orders and done it anyway,” Erin says. “Because he would have died.”
That’s when he was diagnosed with Evans syndrome, an autoimmune disease that attacks the blood cells. There are three different types of blood cells in the human body: platelets, which help blood clot after a cut or bruise; red blood cells, which carry oxygen throughout the body; and white blood cells, which help fight off infection. Evans syndrome attacks any or all of these at any point in time.
In a fortunate twist, the Kvittems were proactive and asked their doctors about the syndrome, which helped lead to Nathan’s diagnosis. It’s extremely rare, but Paul Kvittem’s cousin had the disease and died as a child because of it roughly 30 years ago. The symptoms are often assumed to be separate cases of sickness, not evidence of the syndrome. With an early diagnosis, like Nathan’s, it can be treated.
Now 5 years old, Nathan has been through various treatments that many adults wouldn’t handle with as much cheer. Playing like any little boy with his Transformers action figure at the table, you wouldn’t know he’s had to take immune suppressants, like steroids and chemotherapy, almost his entire life. Steroids, Erin says, were used a lot. “He would balloon up; it was so sad.” The steroids were used when they were waiting to see if a new drug would work for them. But then about a year and a half ago, the steroids stopped working.
“That was super-scary,” she says. While it was just a backup, it was nice to have that option if they needed it. So then their only option, while they searched for a new drug to try, was blood transfusions. “His body would kill his blood off, then he would get more [blood transfusions]. It was constant,” she says. He’s also taken chemotherapy drugs, since those suppress the immune system. But many of the drugs they’ve tried were taken off the list not because they didn’t work, but because of side effects.
“[It] was a really hard decision because they worked, but he’d get mouth sores or something,” Erin says. He couldn’t eat or open his mouth.
So a little over a year ago, after the steroids stopped working, they tried a new medication called Sirolimus. With all the meds Nathan was taking, the health of his kidneys was a huge concern. “So the beauty of this medication is that it’s for kidney transplant patients, so it’s not hard on your kidneys,” Erin says. “It suppresses the immune system so the body will accept the new kidney; it won’t fight it off.”
It’s been over a year since he’s needed a blood transfusion, and the Kvittems are ecstatic. While he still needs shots to keep him from getting sick with everyday illnesses, since his immune system is weakened, it’s easier than when it all began. And Nathan handles it like a superhero. When Erin asked him if she finds tears in his eyes now with the shots, he cheers, “Nope!”
His superhero attitude and his love of superheroes has inspired the Kvittem family to host Nathan’s Superhero 5K Fun Run, held in May. The idea is to help raise money for the medical expenses involved, spread awareness, and eventually raise enough money to donate to research on Evans syndrome. Awareness, Erin says, is extremely important, “because I don’t know that we would have found out what this is if we hadn’t already known about it.”
It’s been a learning experience, both about medical treatment and life, Erin says. Even with the new drug, and fewer visits to the hospital, “I’m still scared every day,” she says. “I can guarantee I wouldn’t appreciate every day as much as I do now if it hadn’t been for him getting sick.”
If you want to help:
Visit the website to learn more about how to donate to the Kvittem family to help with medical expenses, or to help out with next year’s Superhero 5K Fun Run.
