EPHRATA — Six-month-old Isaiah Brewer was sick and his parents didn’t know why.

In October 2010, Heather and Riley — Isaiah’s parents — first noticed something wrong when they spotted blood in Isaiah’s urine.

Doctors concluded the bloody urine was the result of pressure on the bladder causing urine to back-flow into the kidneys. The couple was told Isaiah should grow out of the condition, said Heather.

At first, that seemed to be the case. The bloody urine stopped for awhile, only to return three months later.

They tried to see a specialist, but while they waited for an opening, Isaiah grew worse. He was irritable, couldn’t sleep and couldn’t keep food down, said Heather.

Heather and Riley drove Isaiah into the emergency room in Moses Lake. Doctors there determined his blood count was low enough to require a blood transfusion.

The Brewer’s family doctor, Hollie Matthews, came in and looked over Isaiah’s test results. She put the pieces together and came up with a possible diagnosis: atypical hemolytic uremic syndrome (aHUS).

While hemolytic uremic syndrome is often caused by bacterial infections, usually E. coli, atypical cases are believed to be genetic and are caused by an abnormality of a component of the immune system called the complement system.

The abnormality causes red blood cells to break down when the immune system is battling an illness. After being metabolized by the liver, these broken-down blood cells clog the kidneys, resulting in kidney failure.

It was a serious enough diagnosis to warrant a helicopter ride to Sacred Heart Hospital in Spokane. Heather went with Isaiah in the helicopter while Riley went back home to pack for a stay in Spokane.

The magnitude of their son’s illness hadn’t yet hit either parent.

“When we first went to the hospital … things were happening so fast that it was just moment to moment and all we could do was just take things as they were coming and deal with it,” said Riley.

As he packed the bags, it was Riley’s first chance for the situation to sink in, he said.

“I just started crying uncontrollably and then I knew that I needed to get the bags together and get (to the hospital), so I forced myself to stop crying,” he said.

Two days later, Heather had her first opportunity to hold Isaiah since he was admitted to the pediatric intensive care unit at Sacred Heart.

“He had so many tubes coming out of him,” she said. “The nurse said, ‘Well here, do you want to hold him?’ And it had been two days since I’d gotten to hold him.”

When Heather walked out with Riley to their car, the memory of holding her child carefully with so many tubes attached to him, she let herself cry.

But when the Brewers met Isaiah’s new doctor and were presented with a plan of action, hope replaced their worry.

Dr. Joel Hernandez, a pediatric nephrologist, is the principal investigator at Sacred Heart for a clinical trial of the drug Soliris (eculizumab). The family also met Registered Nurse Ruthie Franks, the clinical research coordinator for the trial. While the FDA recently approved the drug for the treatment of aHUS, the trial is ongoing for children one month to six years old, said Franks.

Once the doctors determined Isaiah’s illness was the atypical version of the disease and was not caused by a bacterial infection, Franks worked to get him on the Soliris trial.

Isaiah got his first dose of the drug his first week at the hospital, then another dose the week after that. Every two weeks since then, Isaiah has received a dose of the drug. He was the youngest person ever to receive Soliris and he will continue taking it for the rest of his life.

His blood cells ceased breaking down and his kidneys are now fully functional.

“It was really amazing that the drug was there and it was ready when it was,” said Riley. “If the drug wasn’t there, the situation would have been a lot worse.”

Without the drug, Isaiah probably would have required kidney dialysis on a regular basis, he said.

Isaiah’s development slowed in some areas due to aHUS, said Franks. Now almost 2 years old, he’s back on track.

You can’t tell just from looking at him that he has aHUS, said Heather.

“He just looks like a 2-year-old,” she said.

Because he started the treatments at such a young age, the hospital visits to receive the drug don’t faze Isaiah, said Franks.

She credits his parent’s influence for Isaiah’s strength.

“Mom and dad are just raising their kids really well and it’s a testament to them as parents,” she said. “They are remarkable.”