Posted on 29 March 2014.
For her fourth birthday, Kynslee Knight of Decatur will celebrate with cake and candles – and a hotel stay topped off with a nice, long walk.
“To raise money for my kidneys,” the spunky 3-year-old said, distinctly pronouncing each syllable of the last three words, bobbing her head from side to side with each one.
“Where are we going to stay?” her dad, David, asked.
“At a hotel!” she responded excitedly.
“She loves staying at the hotel,” her mother, Bridget, interjected.
SIDEKICK – With her trusty “red Minnie” at her side, 3-year-old Kynslee Knight bravely fights kidney disease, unbeknownst to many. “This little red Minnie has gotten her through,” her mother, Bridget said. “She’s had it ever since she was 10 months old, and she carries her everywhere she goes.” Messenger photo by Joe Duty
Family and friends have formed a team for The National Kidney Foundation’s Fort Worth Walk April 6 in honor of the young warrior.
Just before she turned a year old, the previously healthy baby was diagnosed with minimal change nephrotic syndrome and diffuse mesangial hypercellularity.
“The hardest thing I’ve ever had to deal with was seeing her at 9 months old screaming and crying and holding her down, and you can’t explain to her what’s going on,” David said. “She doesn’t know. You’d give anything in the world to switch spots with her. Until you experience something like that with your child where for three months you don’t know what’s going on, and they can’t talk and you can’t explain …”
TYPICAL LIFE – Although she spent a year-and-a-half of her young life in and out of hospitals and doctor’s offices in the diagnosis of kidney disease, 3-year-old Kynslee Knight now lives a typical life with her parents, Bridget and David Knight of Decatur. Messenger photo by Joe Duty
When Kynslee was 9 months old, her mother went to change her diaper.
“And it was red,” Bridget said.
She made an appointment with the pediatrician, who initially thought it was a urinary tract infection.
“They did some tests on the urine sample and called us the next day saying there was so much blood in there that they wanted us to go to the ER,” David said.
The infant was leaking large amounts of protein and blood from her kidneys into her urine.
The couple, who had just moved from a remote part of Oklahoma to near Oklahoma City two weeks earlier, rushed their daughter to The Children’s Hospital at OU Medical Center.
Kynslee was admitted and over the span of her weeklong stay, doctors ran more than 30 different tests, including a biopsy, ultrasound, blood work and transfusions of albumin, the protein in the kidneys that were leaking.
“It’s one of every parent’s nightmares for his or her child to be sick, but to not know what it was made it even worse,” Bridget said. “They knew something was wrong with her kidneys but couldn’t tell us exactly what it was.”
The family was in and out of the hospital from January until March of 2011, without a diagnosis.
“And if we weren’t in the hospital, we were at the doctor’s office, at least once a week and sometimes even several times a week,” Bridget said.
Kynslee’s little body had swelled so much that doctors couldn’t draw blood, so they inserted a PICC line.
“Then the PICC line clotted,” Bridget recalled. “So finally after a few weeks of trying to get the blood, they decided to put a central line in her chest. That’s how they finally got it to do the genetic testing that came back with the diagnosis that we got.”
After three months, the family finally got some answers.
“It was the longest three months ever,” Bridget said.
But the diagnosis only answered a handful of the couple’s questions.
FOR KYNSLEE – Many of Kynslee’s family members, including her parents Bridget and David Knight, sport green wristbands that read “I Wear Green” on one side and “For Kynslee” on the other. Messenger photo by Joe Duty
The cause of the illness onset is unknown. She is the first in both Bridget and David’s families to be diagnosed with kidney disease.
“They said she should’ve developed those signs at birth or later as a child, after age 6 or so,” David said. “There are no case studies. It’s very rare.”
“That’s one of the reasons it took so long for them to find a diagnosis because of the age that it happened,” Bridget said. “The doctors called her the little puzzle.”
Kynslee was given doses of as many steroids as her little body could handle.
“They were basically trying to keep her kidneys from failing,” David said.
In turn, the steroids lowered her immune system, making her prone to all types of illness.
After a year-and-a-half, doctors weaned the infant off of the steroids, employing them only after she relapsed.
“When she relapses, she basically leaks protein,” David said.
“If she gets sick, that’s when she can start leaking it,” Bridget added.
Fortunately, she has not had a relapse since the spring of 2012.
She takes a combination of prograf – which is commonly administered to transplant patients but is also proven to help with kidney function – and enalapril – blood pressure medicine, which helps keep the protein from leaking.
She continues to take that prescription to help her kidneys to function properly and will continue to do so until age 6.
The prognosis thereafter is unknown.
“They just said that her deal is so rare that there’s two scenarios – grow out of it or at some point possibly have to have a transplant,” David said. “Those are your best and worst case scenarios. We choose to focus on the best. God’s healed her, will continue to heal her and protect her. And that she’ll just grow and progress normal like she has.”
Kynslee has been in remission for two years now. She visits the nephrologist every three months to check on her “special kidneys.” She has sonograms, or as Kynslee says, “pictures of her kidneys,” taken twice a year just to keep an eye on them.
There is also blood work and urine analysis, but the young fighter takes it all in stride.
After having blood work done, the toddler proclaims it’s been a rough day, but that’s about as much of a complaint as you’ll hear from her.
“She’s pretty much grown up as a 10-month-old into a toddler going to the doctor all the time,” David said. “When she was young, she just cried because she didn’t know. Now she knows what’s going on. She knows about blood work. She hops up there. They do ultrasounds, she lays there by herself. It’s been like that for the last couple of years. We always tell her the day before, ‘We’re going, this is what they’re going to do’ … But she doesn’t try to get out of the chair or anything. She just knows that’s what it is. She’s a strong little girl. ”
“She’s not scared,” Bridget said, “I was sad the first time she wanted to sit in the chair by herself and get her blood pressure taken … She’s just concerned about getting a sucker and a sticker.”
Outside the doctor’s office and taking medicine twice a day, Kynslee is a normal little girl.
She loves playing – be it soccer, princesses, babies, dress-up with her cousins and even “doctor.”
“She’s all girl,” her dad adds with a laugh. “She has a great imagination … People who never met her prior to two years ago would have no clue. Early on it was rough – from 2011 for a year-and-a-half. She was on and off steroids; she had the central line on her chest. She couldn’t take a normal bath; she couldn’t go swimming.”
But in those times, the family leaned strongly on their faith and family.
“We just knew that He blessed us with her,” David said. “She’s His child and would take care of her … Once you give all that burden to God, He’ll take care of it. Because we can’t do it by ourselves … In addition to that, our families were like our rock. We definitely couldn’t have gotten through it without our family.”
But perhaps the biggest inspiration is in Kynslee herself. “As parents, we wish we could be the ones who have to go through the things that Kynslee has had to,” Bridget said. “I wish that going to the doctor, having blood work, ultrasounds and taking medicine wasn’t ‘normal’ for her. With that being said though, I am also so thankful for the technology, research, medicine and our amazing nurses and doctors that we have had at OU children’s and the ones that take care of her now at Cook Children’s in Fort Worth.
“And I think it’s helped who she is. She’s just real sweet and laid-back and easygoing.”
And a sweet, healthy girl looking forward to celebrating her fourth birthday with a stay at a hotel.
Kynslee and her loved ones will walk in the National Kidney Foundation (NKF) Fort Worth Walk on Sunday, April 6, at Trinity River Park in Fort Worth.
To make a donation to Team Kynslee, visit bit.ly/1i1OVFD.
“We would like to thank everyone who has made a donation to the NKF on behalf of Team Kynslee and those who will be walking with us,” Bridget said. “And as always, thank you for your continued prayers for our sweet girl.”
QUICK KIDNEY FACTS
- 26 million American adults are living with kidney disease – and most don’t know it.
- 1 in 3 American adults is at high risk for developing kidney disease today. The risk increases to 1 in 2 over the course of a lifetime.
- Kidney disease kills over 90,000 Americans every year – more than breast and prostate cancer combined.
- Early detection and treatment can slow or prevent the progression of kidney disease.
- Of 118,000 Americans currently on the waiting list for a life-saving organ transplant, more than 96,000 need a kidney. Fewer than 17,000 people receive one each year.
* source: The National Kidney Foundation