How a Kittanning boy with 2 rare blood disorders found hope at UPMC Children's Hospital

The Free Care Fund at UPMC Children's Hospital of Pittsburgh ensures no child is denied medical care. And every year since 1954, KDKA-TV has helped raise money for the Free Care Fund with our annual holiday telethon.

This week, as we get ready for our 72nd annual telethon, we want you to meet some of the children who are alive today thanks to the care they received at UPMC Children's. Among them is 6-year-old River Schafer of Kittanning, one of our two junior co-hosts for this year's telethon.

Spend even a few seconds with River, and you quickly learn he commands attention, and rightly so.

In his short life, River has swum oceans, overcoming the odds.

"It was just bad," River said.

The moment he was born, doctors immediately knew something wasn't right.

"He had a black eye. He had bruising all over his back, and they didn't know what was happening," said River's mother, Lauren Young.

At just three weeks old, River was diagnosed with factor VII deficiency, which is linked to clotting in your blood. But doctors said something still wasn't right.

"He was still bleeding too much. He was still bruising too much," Lauren said.

So, at nine months, River was diagnosed with a second blood disorder called Glanzmann thrombasthenia.

"So River had two bleeding disorders up against him, and we came to find out that he was actually the only one in the world with both of those disorders," Lauren said. 

His parents were terrified.

"It was scary, very scary, knowing that they had no protocol, no plan. There was no trail blazed before him for them to even begin to know what to do. So, we knew we were going to be going through a lot of trial and error. A lot of letdowns. A lot of empty hopes. We had those. We definitely had those," said River's father, Rick Schafer.

Any scratch or cut River got, he would bleed profusely.

"Just for him to be able to play, everything had to be padded. We had to put nice, plush carpet in every room that he played in. The handrail for the staircase had to have pool noodles on it because he'd climb on it and get hurt," Rick said.

"By the time he was two, he had been hospitalized 26 times already," Lauren said. 

By the time River turned four, his parents knew something had to give.

"He had never been able to ride a bike. He had never been able to jump on a trampoline. Running was dangerous. He wasn't able to be a normal kid," Lauren said.

Doctors at UPMC Children's Hospital of Pittsburgh decided to try a bone marrow transplant. River spent three months at UPMC Children's before eventually going home.

"Then he started to develop autoimmune hemolytic anemia, which is a transplant complication. And it actually was the worst case they'd ever seen at Children's," Lauren said. 

After another month's stay in the hospital, he came home to a hero's welcome with a parade of emergency vehicles and community fanfare. But the excitement didn't last long. Less than a week later, River wouldn't wake up.

"We got him to Children's very quickly, and he was taken to the ICU. His red blood cell count was very low. He was running a fever and couldn't stay awake," Rick said.

"We were telling the doctors, 'If you don't know what's going to happen to him, then we're going to take him home. We don't want to watch him go in here. We're going to take him home.' And they said 'No. We are not done trying yet. We are not."

Doctors tried drug after drug. Some of it was experimental.

"The amount of medications that they were trying to try to get the hemolytic anemia under control was just outrageous," Lauren said.

And a lot of it wasn't covered by Rick and Lauren's insurance, which is where the Free Care Fund kicked in.

"River wouldn't be here today if it wasn't for the Free Care Fund. We would've not been able to afford that medication," Lauren said. 

Let that sink in. Your donations to the Free Care Fund saved River's life.

"There are not enough hugs and thanks that I can give. There's not enough on this planet that I can give because again River would not be here if it wasn't for the experimental medication that they started him on," Lauren said.

"There are not the right words in the English language to express our gratitude," Rick added. 

They're also grateful to everyone at UPMC Children's.

"Our family? We became family," Rick said.

"We saw them more than we saw our friends and family. They truly became our family," Lauren said. 

River is now in first grade. He likes to play video games with his best friend, Blake. But he's also doing all the things he could never do before, like racing Blake on four-wheelers in the backyard, riding bikes and playing sports. Just being a kid.

And now, in an effort to pay it forward, River's family is giving back to the Free Care Fund.

"We felt how much stress it pulled off of us receiving all of it, so we couldn't not give back," Rick said.

In October, River's school held a "penny a vote pumpkin war."

"You put coins in your favorite pumpkin, and whoever gets the most gets to donate it to Children's Hospital," River said. 

Half of the proceeds went to the Free Care Fund with a matching donation from a scholarship fund that was started in River's name.

"We were on the receiving end for long enough, and now it's our turn to give back," Rick said.

Give back, and now just watch River run.

And now is your chance to help kids just like River. Please join us this Thursday, Dec. 18, from 3 p.m. to 8 p.m. and donate to the Free Care Fund. Your donations help thousands of local children and their families every year, and we couldn't do it without you.