Media Coverage

1-year-old from Columbia braves illness, awaits liver transplant

COLUMBIA — Xander Barr is affectionately referred to as "Xander the Brave" by family and friends.

The 1-year-old was diagnosed with Beckwith-Wiedemann syndrome, a childhood overgrowth disorder, right after he was born in January 2014. Three months later, he was diagnosed with hepatoblastoma, a rare form of liver cancer.

"The scariest thing about the syndrome is the likelihood of cancer," said Randee Barr, Xander's mother. "Children with BWS are 600 percent more likely to be diagnosed with childhood cancer."

Xander underwent chemotherapy treatments and had surgery at MU Women's and Children's Hospital to remove a tumor on his liver. In November 2014, he was declared cancer free, but his cancer returned in January, and this time, he needed a liver transplant.

Randee and her husband, Bob Barr, who are from Columbia, moved Xander to Cincinnati Children's Hospital Medical Center in Ohio. Randee quit her job after Xander was born; she's split her time between Columbia and Cincinnati, most recently moving back to Ohio on Nov. 5.

On March 1 — her birthday — Randee got a call telling her that the hospital had found a liver for her son. But two weeks after receiving his new liver, Xander contracted two viruses and had two allergic reactions to medications he was taking, which doctors believe caused the new liver to fail.

Randee said the decision to leave her job was difficult because she was the family's main source of income. The Barrs get help from Medicaid for Xander's medical bills, but they still have to get by while covering the extra costs of traveling, food and lodging.

"It's really hard on our family financially, but I knew I could not sit behind a desk all day while my baby was in the hospital," she said.

Bob Barr has remained in Columbia, where he works as a mechanic at Joe Machens Ford Lincoln and looks after the family's two dogs. He described his 22-month-old son as a feisty flirt who always smiles at the prettiest girl in the room.

"It can get lonely not having anyone at home to talk to," Bob said. "My day consists entirely of working and worrying."

Paying for Xander's care

Columbia resident Jessica Bowles leads a group of about 10 volunteers in Columbia who have been raising money for Xander. They started their fundraising efforts on June 9.

"I didn't know the Barrs until all this started," Bowles said. "I have two young children of my own and couldn't say no to a baby who needed help. I would want someone to do the same thing for me."

Bowles encourages people to donate to the Barr family through Xander's Facebook page, "Xander the Brave," or through a website set up through the Children's Organ Transplant Association, a nonprofit organization that holds donations and reimburses the Barr family for any transplant-related expenses. If a group raises $25,000 in donations in six months, the Children's Organ Transplant Association will match the amount by 10 percent, Bowles said. 

"The Children's Organ Transplant Association ensures everything the family needs is provided for them and that the money won't be misused," Bowles said. "The advantage of using a nonprofit like the Children's Organ Transplant Association over a GoFundMe page, is the donations to the Barr family do not go against their income, meaning they are not taxable."

However, Dec. 9 marks the six-month mark for Xander and his fund is still $10,000 short.

To close the gap, Bowles and other volunteers are hosting a "Holiday Cocktail Benefit" at 5 p.m. Saturday at the offices of Inside Columbia magazine. Tiger Bounce, an indoor inflatable bounce house company, has also agreed to donate a portion of its admission fees from Saturday and Sunday, Bowles said, and Mexican restaurant El Tigre will be donating 20 percent of its sales Dec. 10 to Xander. The Children's Organ Transplant Association has agreed to extend Xander's donation deadline until after the El Tigre fundraiser, Bowles said. 

"This time we've been here since Nov. 5, and we can't go home until after the transplant," Randee said. "When he is well enough, we have a room at the Ronald McDonald House we can stay in."

Xander was put back on the United Network for Organ Sharing list in August. He is a "Status 1A" patient, meaning that he is at the top of the list to receive an organ. However, there is no indication of how quickly a viable liver will be found because the liver must be considered a good match.

"Xander pre-transplant was the happiest baby I had ever seen. After the transplant he changed, it's kind of hard to see the old Xander anymore," Randee said. "Hopefully after the next transplant, when he's feeling better, he will come back to us."

Supervising editor is William Schmitt.

http://www.columbiamissourian.com/news/local/year-old-from-columbia-braves-illness-awaits-liver-transplant/article_37fa53f0-977e-11e5-9cd2-a3d471973788.html

 

 

 

 

 

 

2-year-old awaits lifesaving liver transplant

POSTED: 08:53 AM CST Nov 27, 2015 UPDATED: 03:11 AM CST Dec 02, 2015 

 

 

 

 

2-year-old awaits organ donation while fighting for his life

 

COLUMBIA, Mo. -

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.

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.

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