Ft. Jennings family fighting multiple battles

FORT JENNINGS —The Korte siblings, Layla, 7, and Boston, five months, have spent far too much time at Cincinnati Children’s Hospital.

Their parents Anthony and Tiffany feel likewise, as they have been forced to care for their two children following two unimaginable diagnoses, first, Single Ventricle Heart Disease for the newborn Boston, and, at the end of November, T-ALL leukemia for Layla.

“Boston will have his open heart surgery on Dec. 21,” said Anthony, who works at Unverferth Manufacturing in Kalida. “And then Layla will have her last day of her first stage of chemo on Dec. 29. So after that, she’ll get to go home and it’ll be a back and forth to Cincinnati twice a week.”

For Boston, who was born with a heart missing a right ventricle, the surgery will come after the original date of Dec. 12 had to be delayed after he suffered a stroke and a series of seizures. For Layla, even though she is leaving the hospital, it is just the start of what is expected to be around a nine-month-long ordeal. And for their parents, it is a ‘neverending car wreck,’ as Anthony described it.

“I don’t know how to put that into words,” he said. “You don’t know what you’re waking up to every day, especially with the two of them here. Every day it’s something different. Today Boston’s going to have his Glenn surgery for his heart and a half hour later, we have to go meet with Layla and her radiologists because she has to have radiation done. And after that, we will have an appointment with the psychiatrist because of everything that has gone on. and it’s like that every day for three months straight.’

“It’s something that you keep thinking it can’t be real and you can’t be living like this,” said Tiffany, who has had to stop working as an accountant and part-time dance teacher. “You just expect to wake up and find out it was a bad dream. You never expect to go through this.”

“I tell myself I just got to get through this week and we’ll be fine,” added Anthony. “And then next week starts over and it’s just the same thing or worse. And we have to shift to ‘Let’s get through this month and then we’ll be done.’ And now we’re to the point of ‘Let’s just get through this year and we’ll be done.’”

The Korte family has been essentially living in Cincinnati, while older siblings Graysen and Auburn remain in Fort Jennings to attend school with Tiffany’s parents caring for them, since October. And just as there looked to be light at the end of the tunnel for Boston, they were first hit with the delay in surgery and then Layla’s diagnosis sandwiched around Thanksgiving.

But through it all, Boston and Layla have kept their strength and personalities.

“They’re about the same,” said Tiffany about her children. “It’s scary. They even look alike in their baby pictures. I said that at the beginning. They’re also both pretty bullheaded and opinionated. So to have both of them of all of our four kids here is kind of unreal.”

Tiffany said that Layla has been described by hospital staff as “spicy” and that she wants her opinion known.

“But she’s just got a big heart,” she said. “Even now, she cares about her brother and how he is and how her sister, who is her best friend, is doing.”

Layla even had the presence of mind during an appointment to hold her mother’s hand because she knows that Tiffany sometimes cries afterward.

“She should be the one crying and she’s more worried about how I’m doing and that’s just kind of how she is,” she said. “She’s a firecracker, but she’s just got a huge heart.”

And Boston is just as unique.

“Boston is just a mama’s boy who wants to cuddle,” said Tiffany. “But he lets the nurses know what he wants. He likes being rocked and held and it keeps the nurses hopping for him.”

“With his heart, you’re not allowed to get him riled up,” said Anthony. “He knows what he likes and he knows what he doesn’t like. He’ll let you know.”

“Last night, a nurse stood over his bed after I rocked him for three hours and got tired,” said Tiffany. “He likes his butt patted and she did that for over an hour and every time she stopped I would hear him start squeaking and she’d go right back to it.”

Boston, who was named after the NBA’s Boston Celtics of whom the Kortes are fans, is so young that he does not understand what is going on, but for Layla, it was a different story.

At first, adjusting to the hospital was tough for her, but recently she has come back to normal.

“You could tell she pulled in and got shy,” said Anthony. “And now that she’s been here a couple of weeks, you can see her old self coming out.”

“And she’s got a nurse that she likes and she gives him a pretty hard time, joking around, but he dishes it right back to her,” said Tiffany. “And she likes when they dish it back to her. So, it’s definitely good to see the old Layla coming back. She’s kind of getting used to it and she’s starting to feel better so that helps, too.”

Another thing that has helped has been the outreach from people all across the country who have been touched by their story and have sent along donations through the family’s gofundme page and followed along for updates on their Facebook page.

“Instead of sending out 15 text messages, I created a Facebook group to just post updates on Boston in June when he was born,” said Anthony. “And it’s morphed into a 5000-person cult following. And it was natural to combine her story into the same page when we got her diagnosis.”

The parents had no idea that they would get the amount of attention that they’ve gotten from the pages.

“I did it thinking that I would get $1000 or $2000 and not worry about it,” said Anthony. “And now it’s 10 to 15 times that. Now, I’m worried about the tax implications.”

The gofundme page has reached over $34,000 of the $40,000 goal, as of Saturday, Dec. 17.

But one thing in particular that costs no money has really made Layla happy.

“The amount of people from all over the U.S. that are following us is something you would never expect being from a small town in Ohio,” said Tiffany. “People from Hawaii are sending postcards to our kids because they saw our story and they just wanted to do something to make them smile.”

“Or their son made it through childhood leukemia and wants to mail our daughter his teddy bear,” added Anthony. “But she likes getting letters in the mail. What little kid doesn’t like getting letters?”

And it has helped Anthony and Tiffany to know how many people truly care and are willing to do something as small as paying for a dinner out for a night.

“It’s just little things like that, that you don’t expect random strangers to do,” said Anthony. “And it’s not just one or two, it’s hundreds of people.”

“And people who we don’t know are offering to meet us at the hospital to drop off a homecooked meal,” said Tiffany. “People who are bringing their kids down here to Cincinnati either for appointments or are just passing through are picking things up at the store to drop off to us. It’s just unreal.”

And in addition to all the encouragement coming to both the children and their parents, people are also taking care of each child’s Christmas list.

“Facebook asked us to make a wishlist for Layla on Amazon,” said Anthony. “And then they wanted the other two kids’ wishlists. And I swear to God, their wishlists sold out in 24 hours. I told them to put down anything they could possibly think of and people on Facebook just went out of their way and bought everything. It was pretty neat to see.”

But even with all the support and help and kindness, there has been one thing above all, keeping the Kortes going.

“There’s no choice,” said Anthony. ” You have no choice. I keep telling my wife, if we fall apart, they’ll never make it. So we have to stay positive and we have to keep it together for them, which is the hardest thing I’ve ever done.”

Through it all, though, the Kortes have not been alone, with strong support from the staff at Cincinnati Children’s, the Cincinnati Ronald McDonald House, Layla’s classmates at Fort Jennings Local Schools and Tiffany’s parents alternating between each other assisting in either the hospital or back home.

“It’s helped me tremendously to have somebody else here,” said Tiffany, who moved to Cincinnati to care for the children. “It just wouldn’t be possible for A.J. and I to do it by ourselves with both of them here.”

And that kind of help has been invaluable to Auburn, who Anthony described as Layla’s best friend and Boston’s mother hen, and Graysen, who is old enough to understand what they are going through, too.

Among the things that have helped the siblings stay connected are the gaming computers Anthony was able to purchase to enable them to play the game Minecraft and communicate by video chat.

“She’s one of those kids that take about anything and then just bounce back and just keep on going,” said Anthony about Layla. “Not a whole lot affects her, thank God.”

And even though Layla might have to remain in the hospital over Christmas, it still should not be long before she is back home.

But even then, she still faces a long road ahead.

“We’re just getting a whole new journey,” said Tiffany. “For the next eight to nine months, we’ll be in outpatient treatment and a lot of the time, they won’t want Layla going to school or any sort of daycare center. She would have to be home because of her immune system. So that shot any chance of me going back to work any time soon.”

“So that brings us back to a single-income household,” said Anthony. “So we’re trying to raise funds to she can stay home and take care of our two kids that are sick.”

And to that end, the family started two separate t-shirt sales, which will last until Jan. 1, as well as a raffle, to help pay for bills and travel on I-75, for outpatient services twice a week.

Even before this though, the idea of raising money for other families was something that interested the Kortes.

“When we were down here in October it was still kind of warm,” said Tiffany. “And when it turned cold, we didn’t have coats so our outpatient team pulled together and went and got a coat. And it just meant so much to us. It was something that we didn’t have access to and didn’t really have the extra funds to spend money on. So we talked about starting a charity to help other families who are here, either long-term or unexpectedly, get those essentials that they might not have with them.”

“The big thing that got that going too was that everybody has heard of cancer and there is the American Cancer Society,” said Anthony. “But nobody has heard of single ventricle heart disease. So there are no resources for what my son is going through at all. When we get through this, we want to set something up to help other families get through this, too.”

For the family, it is hard to put into words what it has meant to receive all the help and compassion, especially at Christmastime, but one thing mattered the most.

“Just how much it means to like have every single person reach out to us,” said Tiffany. “Sometimes people can think, ‘Oh, they’re getting so many calls and messages. I feel like I’m just bothering them with one more,’ but every single phone call and letter and response that we get means so much to us to have that many people behind us.”

For anyone looking to reach out to the family, Anthony said that Facebook has been the primary mode of communication, whether it has been through direct messages or to stay up to date on Layla and Boston.

For now, the family says that they were told that Boston, who originally did not need a feeding tube and was able to breastfeed, could be able to go to daycare a few weeks after his surgery. And Layla has been responding well to treatment.

Acute Lymphoblastic Leukemia affects white blood cells of the body, either the B-cells or T-cells, as in Layla’s diagnosis. The cancer accounts for less than half of 1 percent of all cancers in the United States, according to the American Cancer Society, and the average person has a lifetime risk of getting the disease of one in 1000. Most cases of ALL occur in children.

The Genetic and Rare Diseases Information Center states that fewer than 50,000 people in the United States have Hypoplastic Right Heart Syndrome, as Boston does. The rare defect is caused by underdevelopment of the structures on the right side of the heart and results in low blood oxygen levels.

The Korte family asks that anyone interested in sending cards send them to Anthony’s parents at 295 4th St., Fort Jennings OH 45844.

Reach Jacob Espinosa at 567-242-0399.