Healthy for the first time in her life

Port girl who received organ transplant starts a new life free of pain and fear, inspires memorial fund donation to help her family with staggering medical bills

STANDING OUTSIDE Thomas Jefferson Middle School in Port Washington on the first day of classes Tuesday, eighth-grader Emory Birling started the school year healthy thanks to a liver transplant she received in January. Photo by Bill Schanen IV
By 
BILL SCHANEN IV
Ozaukee Press staff

On Tuesday, for the first time in her life, eighth-grader Emory Birling started the school year healthy.

Credit for that goes to the grit of the soon-to-be 14-year-old Port Washington girl and Thomas Jefferson Middle School student who until recently has never known a life without pain and uncertainty and Livvy 2.0, the name she and her family gave to her new liver in an effort to add levity to what was an otherwise dire situation.

“She literally has been sick her entire life — until now,” Emory’s mother Katy Klein said. “She said to me the other day, ‘Mom, I’ve never felt this good before.’”

At 19 months old, Emory was diagnosed with portal hypertension with esophageal varices, which sounds as bad as it is. The flow of blood through Emory’s portal vein, which connects organs in the gastrointestinal tract to the liver, was reduced, causing high blood pressure in other vessels.

That, in turn, led to esophageal varices, which occur  when veins in the esophagus become swollen and rupture. Severe, life-threatening bleeding can result.

That’s what happened on Jan. 31, 2017, when Emory’s esophagus began bleeding uncontrollably. Eventually, the bleeding stopped, but her doctors warned that it was likely to happen again, and the next time it could be veins in her intestines that rupture.

Emory’s condition also resulted in severe swelling and removal of her spleen, which her mother described as being the size of a football.

The only cure for Emory was a liver transplant.

Liver transplant priority is determined in part by the MELD, or model for end-stage liver disease, score, which ranges from six, the least urgent, to 40.

In March 2017, Klein told Ozaukee Press, “Emory is a 40. If she does not get a liver, she will bleed again.

“This is so sad, but we’ve been told that our best chance is around heavy-drinking holidays like St. Patrick’s Day,” Klein said at the time. “How terrible is it to pray for someone to die so that your child might live?”

Emory didn’t have to wait as long as some people for a new liver, but the wait was excruciating nonetheless.

When an organ is likely to become available for transplant, a primary and secondary recipient are notified. Twice Emory was designated as the secondary recipient, and twice the organs went to other people. The first time she was the primary recipient, the liver was too large for her.

Then on Jan. 15 of this year came the call she and her family had been waiting for, and in the middle of a snowstorm, the family drove to Children’s Hospital of Wisconsin in Wauwatosa trying to keep their expectations in check.

“I was just holding my breath,” Klein said.

About 11 hours after arriving at the hospital, Emory’s family was told that doctors believed the donor liver was a good match for her and that they would perform the transplant surgery. By the next day, Emory had the new liver she needed to live.

She wasn’t out of the woods yet, however. Complications kept Emory in and out of the hospital for the next month, but after several procedures, then clear indications that her body would not reject the liver, Emory began a new life, one free of pain and fear.

“She’s just so looking forward to living a normal life,” her mother said.

During her ordeal, students in the Port Washington-Saukville School District, most of whom never met Emory, did what they could by donating spare change to help her family with mounting medical bills. 

But Emory’s story also caught the attention of Port Washington resident Joe Buczek, who could sympathize with parents facing the possible death of their child.

On Sept. 2, 2012, two days before he was to begin his freshman year at Port Washington High School, Buczek’s 15-year-old son Tyler drowned in Lake Michigan off Port Washington’s north beach.

From out of the tragedy came the Tyler Buczek Memorial Fund, which every year benefits from the Bags 4 Buczek cornhole tournament and silent auction. Although other community causes have benefited from the memorial fund, most of its money has funded scholarships awarded to Port High graduates in Tyler’s memory.

But with the memorial fund firmly established, Buczek said, he began rethinking the Bags 4 Buczek fundraiser.

I thought, ‘Is it time to be done with this?’” he said. “Then I attended a couple of other fundraising events and all of a sudden it occurred to me, ‘Why can’t we donate money in Tyler’s memory to help someone who is in a really tight spot?’”

After reading about Emory in Ozaukee Press, Buczek said, he felt compelled to help her and her family. The proceeds from this year’s Bags 4 Buczek event, which will be held Saturday, Sept. 15, in Port Washington’s Veterans Memorial Park, will help the family offset Emory’s medical bills.

“I began praying for Emory to get the liver she needed because after losing a child, I would do almost anything that I could to save another parent from going through that,” Buczek wrote on the Bags 4 Buczek website. “Although this fundraiser won’t help save her life, she will have to take expensive medication for the rest of her life, so hopefully our contribution will help them out, at least for now.”

Emory’s parents are grateful for the help because the bills are staggering, to say the least, Klein said. Since Emory received her transplant in January, her medical bills have totalled $1.5 million, Klein said. Health insurance covers much of that, but the family is faced with paying out-of-pocket costs of at least $7,000 a year for the foreseeable future and praying their deductible doesn’t increase, she said.

Klein noted that Emory takes two anti-rejection medications, one of which has an $800 copay for a 30-day supply and the other that has a $1,600 copay for a 15-day supply.

“It becomes really difficult for families in these type of situations to make ends meet,” Klein said. “I had to stop working for a period of time, then returned only part time to take care of Emory. Just paying the bills and putting food on the table gets to be really difficult and adds stress to an already stressful situation.”

Buczek said, “Hopefully we can make a dent in their bills. Maybe we can raise enough money to be able to say, ‘Next year is free for you.’”

Taking a page out of the Tyler Buczek Memorial Fund book, Emory’s family is in the process of starting the #Emorystrong Foundation to help families who face financial challenges because of medical conditions, Klein said.

“We want to raise money for people going through something like we did because you don’t need the stress of figuring out how you are going to pay your mortgage when you’re going through a crisis,” she said.

As for Emory, who has managed to stay on track in school with hard work and the help of devoted teachers, her concerns have shifted from getting a life-saving organ transplant to more typical teenage worries.

Walking into school for the first day of classes Tuesday, she said, “I’m excited, but I’m a little nervous too.”

The Bags 4 Buczek community festival and cornhole tournament will be held from 10 a.m. to 9 p.m. Saturday, Sept. 15, in Port Washington’s Veterans Memorial Park. The event will include food, a beer-tasting tent, silent auction, games and a DJ. To register for the tournament, go to www.bags4buczek.com.

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