‘Hero’ girl with kidney disease inspires dad, community

Kalamazoo and Battle Creek

BATTLE CREEK, Mich. (WOOD) — Charlie Buckley is not your average 9-year-old.

Like others her age, she is playful and curious. She loves Wonder Woman. But she has also already endured years of painful medical treatment and a kidney transplant.

Battle Creek Enquirer readers may recognize her dad’s name: Nick Buckley is the newspaper’s beat writer for Western Michigan football.

“I get really into whatever I’m working on because if I’m not passionate about the story, no one else is going to be,” he said. “So I kind of get lost in my stories.”​

But he’s a central figure in his daughter’s story.

At age 5, Charlie was diagnosed with Nephrotic syndrome, a disease that causes damage to the kidneys.

“My parents didn’t want to tell me until I was like, ‘What’s all this stuff for? Like, what’s happening?’ They were like, ‘Charlie, you’re going to do something that you’ve never done before.’ Then they told me about it and I just starting melting down. I did not know what this was,” she recalled.

charlie buckley first kidney biopsy
An undated photo of Charlie Buckley not long after her diagnosis.

By the time she was 8, she was in end-stage kidney failure. That meant constant trips to C.S. Mott Children’s Hospital in Ann Arbor for dialysis.

“Every Tuesday, Thursday, Monday and Saturday, they would have to take two needles and poke them through (my arm),” Charlie showed News 8.

Through it all, Charlie kept her head up.

“Charlie took everything in stride. She rarely bemoaned the unfairness of it all. She remained her sunny, upbeat self, always looking to entertain. She’s an aspiring singer, though I believe her best future is comedy,” her dad Nick Buckley later wrote in a column for the Enquirer.

Charlie Buckley infusion
An undated courtesy photo of Charlie undergoing treatment at C.S. Mott Children’s Hospital in Ann Arbor.

Charlie started accumulating angels: An army of doctors and nurses provided treatment. Family and friends donated gas cards.

“She is a hero — not just to me. I’m fortunate because I get to hang out with her all the time and be her dad and get this extra special bond with her. But she has been inspiring our community,” Buckley said.

It eventually became clear that Charlie needed a new kidney. Fortunately, both her parents were a match.

“As parents, we like to think we’d do anything for our kids and this was a chance for me to put that into action and actually do that,” Buckley said. “I didn’t bat an eye.”

The Western Michigan football team sent them a video to show support before the surgery in May.

“We were in the hotel in Ann Arbor a couple nights before surgery, and I asked her, ’cause she had one kidney removed already previously, I said, “Charlie, what’s it like to have a kidney taken out?'” Buckley recalled. “She looked at me and said, ‘Dad, if a 9-year old can do it, I’m pretty sure a 34-year old man can do it.'”

After the surgery, Buckley woke up his hospital bed and reached immediately for his cellphone.

“I … noticed a missed call from my wife, Alexis,” he recalled. “I called back immediately. I heard a sniffle and, in that nanosecond before she could speak, a million thoughts raced through my head.

“That right there, for that half second, was the only time I thought something could go wrong. And she said right away, ‘It’s working.’ It just brought chills to my spine.”

Buckley was a prime donation candidate. When he learned he may give his daughter his kidney, even before he knew it would a transplant would be necessary, he started exercising. Even before that, his past led him to make decisions that kept his organs in good shape.

“My dad had substance abuse issues and at the time of his passing, I was 16. I didn’t understand it, really. I had a lot of anger and resentment towards him,” he recalled.

But in time, he realized his father had been sick.

“He had personal demons and he was a flawed person. But he loved me and my sisters,” he said.

His father’s life and death led Buckley to choose never to drink.

The transplant was successful, but Charlie’s illness means that the kidney will eventually deteriorate. The hope is that it will take a long time and by then, medicine will have moved forward. Currently, there are no approved treatments and no cure for Nephrotic syndrome.

“Team Charlie’s Angels” is leading a walk to raise money for research into Nephrotic syndrome, scheduled for Oct. 6 at Leila Arboretum in Battle Creek. Check-in and registration starts at 11 a.m. and the walk begins at noon. You can also register early or donate online.

buckley family photo june 2017
The Buckley family in June 2017.

For now, Charlie is doing very well, her father said. This is the first time since she was 5 that she has had a properly working kidney.

“Just to see her growth, to see her play with her brother on the teeter-totter, it is, um, it’s hard to put into words how it makes you feel,” an emotional Buckley said.

And she gets a hard time from her dad.

​”He brags he gave me a kidney and I have to be kind to him all his life. And I brag I can’t pay him for it. Which works. … If I pay him for it, I go to jail,” Charlie said.

But he’s only joking.

“I am beyond proud to be the father of such a brave kidney warrior,” Buckley wrote. “And I hope one day she fully understands the inspiration she is to me.”

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