Dad gives daughter kidney, gets rewarded with Disney, Citrus Bowl trip
As 9-year-old Charlie Buckley and her family visit Disney World and attend the 2020 Citrus Bowl this week, the trip isn't just about Mickey Mouse and college football.
It’s been a celebration of a year of triumphs for the Battle Creek family.
Last May, Charlie, received a kidney from her father, Nick Buckley. Diagnosed with a rare kidney disorder at age 5, she underwent years of treatment before reaching end-stage kidney failure in 2018.
The transplant surgery was a success.
So in honor of the family, C.S. Mott’s Children’s Hospital in Ann Arbor recommended to lodging site Vbro, title sponsor of the Citrus Bowl, that Charlie and her family receive a free trip to the event in Orlando where the Michigan Wolverines will play the Crimson Tide of the University of Alabama on Wednesday.
“To celebrate the teams selected for the 2020 Vrbo Citrus Bowl, Vrbo wanted to send a deserving family of Michigan fans to a special vacation in Orlando,” said Alison Kwong, public relations manager for Vbro, which stands for Vacation Rental By Owner.
“The Buckley family will get to stay in a Vrbo vacation rental together, cheer on the Michigan Wolverines at the 2020 Vrbo Citrus Bowl and enjoy a day at Walt Disney World.”
The hospital's caregiving team was asked to identify a family who could attend the trip and would enjoy the experience, said Mary Masson, spokeswoman for Michigan Medicine. They picked the Buckleys.
Nick Buckley said when he was approached about the trip, he thought of many other families who could have been chosen. But he decided to accept it for his daughter, who he describes as a pistol with a sense of humor and wisdom beyond her years.
“I’m just reminded of what Charlie’s been through, and if anyone deserves this kind of red carpet treatment in Orlando, I can’t think of a better candidate then Charlie, her brother and her mom, and I’d even say myself probably have earned it a little bit, too,” Buckley said. “But we’ve been so blessed, it’s hard to ask for anything more."
Four years ago, on the day of her 5-year checkup appointment, Charlie woke up with extremely swollen eyelids. A pediatrician checked her urine and found she was spilling a high amount of protein.
The family was referred to C.S. Mott Children’s Hospital where Charlie was diagnosed with and treated for nephrotic syndrome and focal segmental glomerulosclerosis, which results from scarring of the tiny structures within the kidney, according to the National Kidney Foundation. It can lead to kidney failure.
Charlie underwent treatment, including steroids and a list of medicines and clinical trials.
Nothing seemed to help, Buckley said.
By 2018, Charlie was in end-stage kidney failure. She had one kidney removed. She went on dialysis for nine months visiting the hospital three to four days a week.
Her mom, Alexis, a special education teacher, took a leave of absence to care for Charlie.
“Obviously, it wasn’t easy, but Charlie took everything one day at a time and just kind of brightened everyone’s day when she came into the dialysis clinic and had nickname for all the staff there,” Nick Buckley said.
“Really just kind of rolled with everything and showed the resilience that kids tend to have that adults don’t.”
Charlie’s parents were tested to be donors and found out they both were matches. They figured Alexis would be better suited to take care of Charlie and Nick in their recoveries.
In May, daughter and father underwent kidney transplant surgery. The kidney, nicknamed "Lefty," was working within minutes after the procedure.
In the days to follow, Buckley said his daughter regained color to her skin and gained weight as her appetite improved.
“I get to do more things and play more things,” Charlie said about life after the transplant. “I just signed up for dance class.”
Charlie will always have nephrotic syndrome because there’s no cure. The goal now is to get her off medication.
Father and daughter each chronicled their experiences with columns in the Battle Creek Enquirer where Buckley works as a sports writer.
They also advocate for kidney research, participating with their “Charlie’s Angels” team during a one-mile walk that benefits NephCure Kidney International, a nonprofit focused on finding the cause of and curing nephrotic syndrome and focal segmental glomerulosclerosis.
They also advocate for living organ donation. According to the National Kidney Foundation, about 100,000 people in the United States are waiting for kidney transplants.
“We’re fortunate Charlie got hers close to home," Buckley said. “We’ll continue to spread the word of the need. Emphasis on the need so that other kids don’t have to go through what Charlie’s been through. The ones that have, have that shot so they can go out and do fun things like go to Disney and enjoy one of college football’s premier bowl games.”
The trip will be time to take a break from focusing on medical concerns, Buckley said.
“I’m sure it will be a whirlwind few days, but it’s something we’re super excited about,” he said. “I’m sure my family will be rooting for the Wolverines.”
As a sportswriter, Buckley says he’s staying neutral.
“I definitely have a respect for Coach Harbaugh and a lot of the players,” he said. “A number of them have actually come through C.S. Mott’s Children Hospital to visit patients who are inpatient overnight, including Charlie. So she’s actually met some of the players before from them coming to the hospital.
"I know those are good people, and those the kind of people you need to root for. I’m all for the Wolverines’ success on that end.”