2-year-old awaits lifesaving liver transplant

For almost two years, his entire life, Xander Barr has been a fighter.

“He hits like Mike Tyson back in the day. I mean the kid’s got a fist on him,” said his father, Bob Barr.

Xander’s fight began before he was even born.

Doctors diagnosed him in the womb with Beckwith-Wiedemann syndrome, a rare genetic disorder.

“He has an extra one of my chromosomes,” said Barr.

Doctors noticed he had an overlarge tongue that protruded from his mouth, usually a marker for BWS. Barr remembers thinking Xander looked related to Gene Simmons from KISS.

“She [my wife, Randee] didn’t like that too much but I thought it would be awesome to have a rock star kid, but that’s just me,” he said.

But the larger tongue was the key and doctors delivered Xander prematurely in January 2014.

BWS made Xander 600 times more likely to develop childhood cancer, and shortly after his birth doctors discovered lesions all over his liver.

Before he even made it out of the hospital, Xander began extensive chemotherapy to treat stage 3 hepatoblastoma,

“He was declared cancer-free after a few months of chemo, which he handled like a champ,” said Barr. “Not two months later, it was back again, before he was even a whole year old.”

At that point, Xander needed a liver transplant.

Barr said he and Randee decided to switch hospitals, because the MU Women’s and Children’s Hospital couldn’t provide all the correct care Xander needed.

The two settled on a hospital in Cincinnati, where they believed Xander would get the best treatment possible.

“We went out that way, did all the paperwork, got him sent up there,” Bob Barr said. “He had a transplanted liver in 17 days.”

But that liver didn’t last long and unfortunately, it needed to be removed.

Now Xander is awaiting a second liver.

The United Network for Organ Sharing reports there are currently more than 122,000 people on the waiting list for a lifesaving organ transplant.

But there are only 10,000 registered donors.

At this point, he’s been put as 1A on the transplant list, which means he is the top priority for a new liver.

But at this point he’s currently too sick to receive the surgery.

None of this has stopped the community from rallying around the Barr family and offering support.

Bob Barr works at a Joe Machens in Columbia and has been staying in Columbia to work while Randee Barr and Xander are in Cincinnati.

His fellow employees were some of the first people to reach out.

“This is affecting one of our own, a family,” said Brian Neuner, one of Bob’s co-workers. “This is a father so his heart’s in Cincinnati with his son and we need to do whatever we can to help them.”

Neuner said they’re not only trying to help the family with the cost of things like medical expenses and travel, but they’re also raising awareness about organ donation.

“We’re going to increase awareness, the need for organ donors, especially with children,” he said. “I think people think organ donations for adults but this is impacting an infant and his family, so we want to increase awareness.”

The Barrs hope by raising awareness they’ll be able to continue to give Xander his fighting chance.

“I used to think sitting at the DMV, I don’t want to wait for this, I don’t want to fill out this form,” Bob said. “But I wouldn’t have my son if it wasn’t for whoever it was that gave him that first liver. I wouldn’t have him. And that’s more important than really anything.”

To learn more about Xander’s fight or to donate, you can visit this link to the family’s website or the Facebook page Xander The Brave.

All photos and video courtesy of the Barr family.