‘American Ninja Warrior’ finds kidney donor for daughter
TRINITY, N.C. (AP) — Kenny Niemitalo may not have won the top prize on “American Ninja Warrior,” but he came away from the show with something infinitely better — a kidney for his young daughter.
Last year, when the 30-year-old Trinity man competed on the popular NBC reality competition program, he shared with viewers that his daughter Hazel had been born with a kidney disorder that required her to be on dialysis until she could undergo a kidney transplant. His motivation was simple: Among all those viewers across the country, there could be a potential kidney donor out there.
“I wanted to utilize that platform and get the word out that my daughter was going to need a kidney,” Niemitalo says. “I spent most of my audition video saying my daughter needs a kidney, and then when I actually went on the show, I did well enough that they aired the entire story about her needing a transplant.”
Sure enough, after Niemitalo’s segment aired, the phones at Wake Forest Baptist Medical Center’s transplant unit began ringing off the hook with calls from potential kidney donors from all over the country — so many calls, in fact, that the lines jammed and technical support had to be called in to resolve the problem.
Among those callers was a 40-something woman from upstate New York — a total stranger to Niemitalo and his wife, Maria — who wanted to give little Hazel one of her kidneys. Several months later, the woman found herself in Winston-Salem, undergoing testing to see if she was a match for Hazel.
She was, indeed, a match, and one day in late December — just in time for Christmas — the stranger gave Hazel the Christmas gift of a lifetime.
The road had been a long and bumpy one for the Niemitalo family.
When Hazel was born on April 4, 2015, she was seemingly healthy. Twelve days later, though, she began having seizures, which launched a series of medical appointments — first with her pediatrician, and then with specialists at Wake Forest Baptist, where she was diagnosed with congenital nephrotic syndrome.
“Nephrotic syndrome is a condition where the kidneys are not able to function normally,” explains Dr. Ashton Chen, Hazel’s pediatric nephrologist at Wake Forest Baptist. “The result of that kidney disease is kidney failure, and so most children with the condition will need to either go on dialysis or get a kidney transplant at some point in their life. There’s not a cure for this disease, but a kidney transplant is the closest thing to a cure.”
Maria recalls vividly how difficult it was to hear that news about her daughter.
“I remember when Dr. Chen came in and said, ‘You’ll probably be here at the hospital for weeks to months,’” she says. “At that point, you don’t really know what that means. You don’t really know what a kidney transplant means. You just know that it’s scary stuff.”
Hazel remained at the hospital for nine months, enduring a lot of hard days. Some days she had more seizures. Many days she threw up — as often as 10 times a day — unable to keep food in her stomach because her kidneys had become enlarged. Through all of that, Kenny says, Hazel continued to be, well, a tiny warrior who put on a brave face and remained as upbeat as possible.
Meanwhile, family members and friends volunteered to donate a kidney to Hazel, but they didn’t meet the necessary requirements to match. That’s when her parents decided Kenny should use the “American Ninja Warrior” platform to broaden their search.
“I knew that if you threw that many darts at the dartboard, one of them would finally stick,” Kenny says.
Sure enough, potential donors from all over the country volunteered their kidneys, and one of them — Amy Schlee of Oneonta, New York — was found to be a match for Hazel.
“I saw the story on ‘American Ninja Warrior,’ and I knew immediately this was what I wanted to do,” Schlee says. “I really wanted to help her, so when I found out I was a match, I was very excited.”
According to Hazel’s nephrologist, kidney donations from complete strangers are unusual, but not unheard of.
“We call that a good Samaritan donor, when someone donates a kidney out of the goodness of their heart,” Chen says. “And in this case, it was a lifesaving gift.”
Maria says the couple was blown away by Schlee’s generosity.
“It’s hard to comprehend, because we didn’t know her from Adam,” Maria says. “She was a complete stranger who wanted to help.”
Doctors at Wake Forest Baptist removed Hazel’s diseased kidneys on Nov. 11, 2016, and put her on dialysis for a month before the actual transplant took place. Hazel received her new kidney on Dec. 20, 2016, and a week later she finally returned to her home in Trinity.
This past week, when the Niemitalo family went public with their amazing story, they reported that Hazel has been doing great. And, in fact, Hazel looked great, displaying the energy and activeness one would expect of a 2-year-old while her parents sat through an interview.
According to Chen, Hazel takes three anti-rejection medications every day to prevent her body from rejecting the kidney, and she undergoes regular blood tests to make sure nothing has gone awry in Hazel’s body. If all goes well, her new kidney could last a couple of decades.
“A kidney transplant will not last a child’s lifetime,” Chen says, “but they can last 15 to 20 years if you take care of it. And certainly when you have a living donor, like in this case, those transplants usually last longer.”
As for Schlee, she has remained in touch with the Niemitalo family — they even visited her home in New York about a month ago — and she’s delighted to see how well Hazel is doing with the transplanted kidney.
“It makes me feel wonderful — not just for Hazel, but for Maria and Kenny, as well,” Schlee says. “Their life was wherever Hazel was, so not only is Hazel out of the hospital and able to enjoy life and run around outside like she likes to do, they can enjoy their life now, too. I’m so glad I could help, and I love to see Hazel flourishing.”
Schlee hopes others will see her example and offer to be organ donors, too.
“It’s been an amazing experience — I have no regrets,” she says.
The Niemitalos, of course, have a special place in their hearts — and in their family — for Schlee.
“It’s like all of a sudden you have a new family member,” Kenny says, “and we’re just very, very thankful.”
Information from: High Point Enterprise, http://www.hpenews.com