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Helmut Schmidt, Published May 17 2013

Benefit to help Fargo boy, family as he fights rare disease

FARGO – A full third of Josiah Gillen’s life has been filled with hospitals, biopsies, tests and diets that threaten to suck the fun out of a 6-year-old’s life.

He has an extremely rare autoimmune disease that’s attacking and shutting down his kidneys, despite all that modern medicine has tried to date.

As the kindergartner runs down the hall at Horace Mann Elementary, and later clambers on a playground fort, he doesn’t look like a sick little boy. But Josiah is. Very much so.

His disease is so rare it has no name, only a designation. Due to C3 Deposition Disease, Josiah’s kidney function is down to 50 percent.

He’d love to be Iron Man, swinging down the streets and chasing bad guys. He wants to be a policeman when he grows up. But ask Josiah what he’d want today, and the reply is simple: “Get better.”

Josiah is the son of Tom and Rachel Gillen. He’s the little brother to Elizabeth, 9, and big brother to Veronica, 2.

His father teaches theater at Fargo North High School and Ben Franklin Middle School.

Tom’s fellow teachers, students and friends will hold a benefit for Josiah on Sunday night at North High. It includes an improvisation and variety show, silent auction, concert and meal.

Even as that happens, Josiah could still be in recovery from his third kidney biopsy, done a few days ago at the Mayo Clinic in Rochester, Minn.

Josiah is in Stage 3 kidney failure, Tom Gillen said.

Gillen said he and Rachel were told that if his condition worsens, Josiah will require dialysis and potentially a kidney transplant.

Gillen said the last time they were at Mayo, they were told Josiah had a 50-50 chance of his disease going into remission if he received a kidney transplant.

“If we come to it, we’ll take those odds,” he said. “He’s a great little guy.”

Rachel Gillen said it was just after Josiah’s fourth birthday that they found out he had a hernia.

On a doctor visit for that problem, the physician said he appeared heftier.

The doctor did some further tests, then immediately admitted Josiah to Sanford Health in Fargo.

His lab results “were off the charts,” she said.

“They knew it was something related to the kidneys,” she said, because there was protein in his urine and his electrolytes were far from normal.

Medication to flush the fluids didn’t help.

The family went to Fairview Hospital in Minneapolis for Josiah’s first kidney biopsy. The results were inconclusive, as were the results of a follow-up kidney biopsy. The results of those tests were shared with doctors in Sioux Falls, S.D., Boston and the Mayo Clinic.

The University of Iowa hospital in Iowa City then included his blood work in one of their studies. It took six months before there was an answer: C3 Deposition Disease, something none of Josiah’s doctors had dealt with before.

“The bottom line is that he has chronic kidney disease and he’s in the early stages of kidney failure,” said Brenda Thurlow, his pediatrician at Sanford.

Much of Josiah’s treatment has been through diet. He has limits on phosphorus, potassium, sodium, gluten and fluids.

“He’s definitely my most complicated” case, Thurlow said, praising the Gillens for all they have done to help Josiah.

“They’re fabulous,” Thurlow said. “Josiah is a tough kid. He’s a real strong kid. He’s been through a lot.”

If you go

What: Josiah Gillen Benefit

When: 4 to 7 p.m. Sunday

Where: North High School, 801 17th Ave. N., Fargo

Info: The event includes:

• An improvisational comedy and variety show at 4 p.m.

• Silent auction from 4 to 6 p.m.

• Sloppy Joe meal from 4 to 6 p.m., (freewill donations accepted).

• North High Jazz Band concert at 6:30 p.m.

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Readers can reach Forum reporter Helmut Schmidt at (701) 241-5583