Toddler with rare disease benefits from new drug

Posted: 1:07 pm PST January 27, 2012Updated: 1:48 pm PST January 27, 2012

Less than a year ago, an infant from Ephrata, Wa., was fighting for his life, but thanks to a new drug, Isaiah Brewer is doing much better.

Last January, 9-month-old Isaiah Brewer started to get extremely sick. His parents said he was very pale and had blood in his urine.

"He really lost all his energy," said Isaiah's father, Riley Brewer "Basically, it just wasn't him."

Isaiah's parents, Riley and Heather Brewer, rushed him to the ER in Moses Lake.

"All of his blood levels were low, red blood cells, white blood cells, so immediately they started to give him the transfusion," Riley said.

He was flown to Sacred Heart, where doctors diagnosed him with aHUS, a disease that damages the vital organs and is most common in kids. If found during a child's first year of life, it can be fatal.

"It was pretty frightening. The diagnosis came just in time, because the disease came on incredibly strong. He was sick and he was getting sicker so fast and we were shocked," Riley said.

Isaiah's kidneys started to fail and he was soon put on dialysis. He was sedated and had tubes in his mouth and nose and IVs in his arms.

"It was tough, it was really tough," said Heather.

His parents had to make a big choice, though. At the time, Sacred Heart was one of only five hospitals in the country that had just started a clinical trial for treatment of aHUS. The FDA hadn't even approved the treatment drug, Soliris.

But the Brewers didn't want to see Isaiah suffer any more, so they approved the new treatment.

"For me it wasn't a hesitation at all," Heather said.

Isaiah started the treatment immediately and was the youngest person to ever use the drug.

"He started to recover quickly and it was a miracle drug and it changed overnight," Riley said. "When I was holding him and I started singing, he reached up and started playing with my face and he started laughing at me, and at that moment, we knew things were getting better."

Isaiah was at the hospital for five weeks but with each dose of Soliris, he got better.

"That medication was at the right place at the right time, really," Heather said.

More than six months later, the FDA approved the drug. Now a year later, Isaiah still comes twice a month to get treatment, but the drug has helped him.

Isaiah acts just like any other little boy. He loves cars and trains and playing with all sorts of toys.

"It was like he had a second chance at life," said Riley.

"We have a miracle and I am just really thankful for that," said Heather.

At this point, there's no cure for aHUS, but Isaiah has the treatment and the love and support of his family, which can be the best medicine of all.

"If the worst thing we have to do is have him take medicine for the rest of his life, then I can live with that," said Heather.

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