North Dakota boy battling rare diseases can now get lifesaving treatments in Fargo
Sanford Health has added what it says is North Dakota's only pediatric kidney dialysis program at Sanford Medical Center in Fargo.
FARGO — Eric Bjorlie came down with a stubborn summer flu that struck on July 4 and wouldn’t go away.
“I was out of breath a lot,” the 11-year-old said.
Fatigued, he got lots of rest. Then his skin got itchy and he developed a rash as well as nausea, sores on his lips and badly swollen ears.
It turns out that bout of the flu could have been what triggered a rare autoimmune disease that left his kidneys unable to function, requiring him to go in for dialysis three times a week for four hours to cleanse his blood of impurities.
Luckily for Eric and his family, Sanford Health now has what it says is North Dakota’s only pediatric kidney dialysis service, located in the Children’s Hospital at Sanford Medical Center.
The Bjorlies live in Pekin, a North Dakota town of about 75 near Devils Lake that's a two-hour drive from Fargo, but would have had to drive to Sioux Falls or Minneapolis for the treatments that are required to keep Eric alive.
When the rash and other symptoms appeared, the doctors in Devils Lake couldn’t find anything abnormal to explain Eric’s condition. The tests they ran came back normal.
“They were pulling out their medical books,” his mother, Lacie, said. “They didn’t know what was wrong.”
Then, when the Bjorlies were about halfway home, the doctor called with the results of another test indicating Eric’s kidneys aren't functioning well. They raced back to Devils Lake and Eric was taken by helicopter ambulance to Sanford Medical Center, where he immediately was put on dialysis while in the pediatric intensive care unit.
That was on July 21, the beginning of a two-week hospital stay. Lacie and the four Bjorlie children are staying nearby at Ronald McDonald House, making it easier to get in for his dialysis treatments and medical appointments.
It turns out that not only is Eric battling a rare autoimmune disease, but also a rare blood disorder.
One Saturday when the family was home for the weekend, Eric suddenly developed a nose bleed that wouldn’t stop for several hours. Then he started vomiting blood.
He was rushed back to Sanford Medical Center, once again by air ambulance.
“They wanted him right back here,” Lacie Bjorlie said.
Tests indicated he has TMA — thrombotic microangiopathy — a rare disease that attacks his red blood cells and platelets, complicating the treatment of his autoimmune disease, which attacks the blood vessels.
The kidneys, dense with blood vessels, are often damaged by the autoimmune disease, once known as Wegener’s disease.
“The kidneys are a major organ of this disease,” said Dr. Batoule Majed, the pediatric kidney specialist who is treating Eric.
In Eric’s case, “Unfortunately, the kidneys are fully damaged,” she said.
Because the autoimmune disease is still active, Eric isn’t a candidate for a kidney transplant and therefore must continue with regular dialysis treatments.
His doctors hope that he can progress to home dialysis treatments, which would then require monthly checkups with remote monitoring.
Doctors believe the autoimmune disease had been causing damage to Eric’s kidneys for several weeks before his diagnosis.
“We think this was happening for three weeks, four weeks, when he came in,” Majed said. “He already was presenting with kidney failure.”
Sanford had been preparing for two years to launch its pediatric dialysis program, which has two units. Fundraising help came from the Children’s Miracle Network, Sanford Foundation and others.
Besides the investments in equipment, Sanford had to train staff to offer pediatric dialysis.
“It’s not just the brick and mortar. It’s all the training that’s gone into the last two years,” said Dr. Jake Fish, medical director of the Children’s Hospital at Sanford Medical Center. “It’s been about two years in the making to get everything done. This is monumental for us.”
Majed added, “Everyone was so willing to make this happen.”
Sanford’s dialysis center at its South University Drive campus can treat patients ages 16 and older, meaning younger patients had to travel for treatments.
The frequent long drives for dialysis treatments present hardships for families, Majed said. Two of her patients' families moved to make it easier to get in for the treatments.
“When the need arises these are the families that are hit hardest,” she said. Without travel, “it takes three-fourths of your day already,” Majed said. “They can lose days from school and activities.”
Unfortunately, an increasing number of Majed’s young patients have serious kidney disease that will require dialysis. “I can see the need,” she said. “I have more and more children approaching kidney failure.”
Nationally, about one in 100,000 children develop end-stage kidney disease, which requires dialysis or a kidney transplant.
Children requiring transplant kidneys go to the top of the priority list, and usually receive a transplant in one year, instead of the two-year wait typical for adults.
Because Eric’s case is so complicated, however, a transplant must wait until the autoimmune disease is tamed. He is on multiple immunosuppressive drugs, among other medications.
“He has two really challenging diseases,” but is “definitely improving,” Majed said.
Eric is home-schooled, so is able to continue his education while receiving treatment in Fargo. Despite his medical battle, Eric has been able to go fishing with his father. Otherwise, he spends a lot of time playing video games, a safe activity, since he has to restrict his activities. He’s also been able to visit the Red River Zoo in Fargo, where the red pandas and sloths are his favorite animals.
Before his medical battle, Eric was spending a normal summer — playing with friends in the park, jumping on a trampoline, having water fights.
“Just trying to stay cool,” he said.
Lacie Bjorlie is grateful to have the dialysis treatments available much closer to home, and to be able to stay with her children at Ronald McDonald House during the lengthy treatments.
“This is closer to home,” she said. “It makes it easier.”