Newark 9-year-old awaits transplant
Looking for gift of life, he has positive outlook
Bentley Cherup is a good-natured nine-year-old with a big-ticket item on his Christmas wish list: A new heart.
His playful smile, accented with a healthy smattering of freckles under a shock of strawberry blond hair, has been winning fans for years as friends and strangers join his family in praying for the right donor at the right time.
And while he’s hoping for a new heart any day, his preference is actually sometime after Dec. 25.
“Like, maybe January 9,” he said thoughtfully last week after school had let out for the holiday.
His mother, Mandi Cherup, laughed.
“Bentley said he wanted to get past his birthday, Thanksgiving and Christmas. He loves being with family. And then he said his heart could come,” she said. “And I said, ‘Well, I don’t really think that’s how it works, but we’ll still take a heart if they call us.’”
Bentley was diagnosed at 20 weeks in utero with hypoplastic left heart system (HLHS), a congenital heart defect in which the left side of the heart is underdeveloped, preventing the blood from flowing adequately through his body. To help redirect his circulation, he underwent four open-heart surgeries before he turned three — the first at three days old.
After the fourth surgery, known as the Fontan, Bentley lost blood flow to his left lung. Attempts to restore it were unsuccessful, and after several hours in surgery, efforts were abandoned and Bentley continued his fight with his healthy right lung.
“His lung didn’t slow him down. He just had to get used to that — relying on one lung,” Mandi said.
Bentley continued to live out his childhood in as normal a fashion as possible, enjoying family outings with his parents and siblings — older brother Braxton and younger sister Britlynn — playing baseball and even going to school.
A year after his fourth surgery, however, a new complication arose: Bentley was diagnosed with protein-losing enteropathy (PLE), a condition that causes loss of protein in the gastrointestinal tract. This leads to swelling and fluid buildup in the body, among other things, and has been found to be connected with congenital heart disease or the surgeries to correct it.
The condition was controlled for a while with the help of medication, but gradually even that began to lose its effectiveness.
In the summer of 2020, Bentley underwent a procedure to have a fenestration put into his heart — a “hole” that would help relieve the pressure of the blood flow from his adjusted circulation. It bought the family some extra time but wasn’t a long-term solution.
That November, on his birthday, Mandi took Bentley in for what she thought would be a standard followup appointment, only to be dealt a devastating blow:
“There’s nothing more we can do for your child,” the doctor said to them. “He might live until the age of 10 if we don’t do a transplant.”
And so, after undergoing a battery of pre-transplant testing, in December 2020 Bentley was listed for a new heart.
He is aware of the severity of his situation, Mandi said — she and her husband, Kevin, make sure to be straightforward with him.
“He is ready, he wants his heart, so bad. Is he scared? Oh absolutely. Does he know the risks? Yep (and) he understands,” Mandi shared on Bentley’s Facebook page, Bentley Strong. “…We asked, ‘Do you want to be listed? Or do you want to live your life until God calls you home?’
He said, ‘I know it’s risky but I want a new heart, (and) if I don’t make it through I will still snuggle you close every night.”
In his spare time, the Newton Elementary School second-grader likes to spend time doing things that many nine-year-old boys do: Playing baseball, WWE, Legos and Star Wars. Being with his family.
And he shares a special heart connection with another local family: Among his best friends is Jake Whisner, older brother of Maci Whisner, a fiveyear-old HLHS patient who passed away in September.
The pair go to the same school and played baseball together — Maci’s father and grandfather, their coaches, even had “Bentley Strong” T-shirts made for Benley’s whole team as a surprise.
“(They) really had such an impact on Bentley,” Mandi said.
As he awaits his new heart, Bentley is classified as Status 1B, the second highest priority on the transplant list.
“1B is pretty serious — he’s sick but he doesn’t need IV medications to function,” Mandi said. “Luckily, Bentley gets to wait at home.”
In the meantime, he has a heart to help others.
After having spent time — including over the holidays — in the Ronald Mcdonald House during Bentley’s procedures in Columbus, the Cherups decided to begin collecting donations for toys to pass out to children in their situation.
For the past four Christmases, with the help of his parents, Bentley has raised funds to purchase Christmas gifts for children in the Nationwide Children’s Hospital cardiac floor. This year’s fundraiser brought in more than $2,000.
While COVID has changed procedures for handing out the gifts — Bentley is no longer able to pass the gifts out directly — he still enjoys being able to play a part in making a child’s day brighter, Mandi said.
As he and his family await the gift of life that they know comes at a cost, the Cherups are determined to focus on the positive.
“We have to live our lives,” Mandi said. “Here we are, a year (after being listed), just living life normally. And Bentley doesn’t let it get him down.”