Kylie Boardman walks through the New Gloucester Fairgrounds in New Gloucester. Boardman, a former athlete at Gardiner Area High School and Central Maine Community College, is waiting for a kidney transplant. (Joe Phelan/Staff Photographer)

Kylie Boardman has been fighting the odds since the day she was born.

Boardman, a Gardiner native, has solitary dysplastic kidney disease, which means she was born with one kidney that will never reach full development. Before she was born, doctors told her parents, Bill and Jennifer Boardman, that she had a less than one percent chance to survive.

The doctor’s advice? Terminate the pregnancy.

“It was a day that my wife and I will never forget,” Bill Boardman said. “It wasn’t in our nature (to do it). We went home and were like, ‘If we get one hour with her, great. If we get two hours, that’s even better.’ We learned to put a catheter in our daughter at 2 days old. We’d do all this at home to survive as long as she could. We were told she’d need a transplant in her teens or early 20s, and here we are.”

Kylie Boardman defied those odds and played four sports (field hockey, volleyball, girls hockey and softball) at Gardiner Area High School. She also played women’s hockey at Central Maine Community College in Auburn, recording eight goals and 22 assists in two seasons.

“In retrospect, I really shouldn’t even be here,” Kylie Boardman said. “I feel so blessed that I’m here in the first place and that I’ve been able to do as many things as I’ve been doing. I’m not someone who just sits at home.”

Now 21, Boardman is in need of a kidney transplant. She also has fluid pressing against her ocular nerves, and may need a shunt in her brain to prevent her from going blind. She is exhausted all the time. At a time in life when she would normally be out with her friends, she rests at home, because simple acts expend more energy.

“I wake up and feel like I slept a good two hours, even though I normally get 10,” Boardman said. “I have shortness of breath, because there’s fluid around the lungs as well. … Putting up my ponytail is like running 5 miles. It’s a very hard adjustment going from an active sports lifestyle to this.”

Battling the odds

As a standout athlete at Gardiner, Kylie Boardman earned Kennebec Valley Athletic Conference honors in volleyball and was a member of the 2022 Class B softball state championship team. She was most at home on the ice as a tough and skilled defenseman on the girls hockey team, for which she also served as a team captain.

It was never obvious that Boardman was playing with one functioning kidney, and the family made a point not to publicly disclose it.

“It’s not something we shared. We never used as an excuse,” Bill Boardman said. “What she did was kind of remarkable, considering what she was going through.”

According to the National Institute of Diabetes and Digestive and Kidney Diseases, the global odds of a child being born with kidney dysplasia is 1 in 4,300. The kidneys are a filtration system for the human body, helping clean blood, and filter waste and extra fluid into urine. It also controls sodium and potassium levels and helps produce hormones.

One effect of kidney dysplasia is a lower than normal glomerular filtration rate (GFR), or how quickly the kidney can filter waste and extra fluid from the blood. It also makes Boardman’s bones more fragile. When she was freshman in high school, she broke her pelvis, which effected the remainder of her playing career.

“It never fully healed, I re-injured it two different times,” Boardman said. “I couldn’t play my sophomore season of volleyball, which was fine, because (it was the COVID season). Because there’s less calcium, it never fully healed, so I played with this broken bone inside of me.”

Kylie Boardman, who played four sports at Gardiner Area High School and ice hockey at Central Maine Community College, was born with solitary dysplastic kidney disease, and now that she has reached her 20s, it is beginning to affect her energy and vision. She is on the waiting list for a kidney transplant. (Joe Phelan/Staff Photographer)

Last year, during her final season with the CMCC women’s hockey team, she began to notice the fast decline of the remaining kidney.

“My quality of life has definitely gone down. As I’ve grown more, my kidney is trying to do more,” Boardman said. “I hit that point where it’s just not able to pump anymore for me.”

A needed getaway

Bragoli Gym at Gardiner Area High School is rocking with pop music and laughs at the tail end of a practice for the Gardiner volleyball team.

Bill Boardman gathers the team for final instructions before a match the following day against Medomak Valley. He’s in his third season as the head coach of the Tigers, and led them to the Class C final last season.

Boardman was up front at the beginning of the season, with the team and parents, about Kylie’s need for a kidney transplant — and that when it happens, he’ll take a leave of absence, if it’s during the season. He constantly travels with Kylie to her medical appointments.

“The fact that he’s here for us and loves us, we’re just all so grateful,” said Gardiner senior Joely Cote. “It’s also important that we’re giving him that support while he’s going through this. We love him, and we want to look out for him the same way he looks out for us.

Coaching is a needed escape from the concerns a father has for his daughter.

“He is so devoted to that team and he loves coaching that team,” Kylie Boardman said. “It’s refreshing to see him coach and coach with such passion. It’s not an easy process (for him), because he comes to most of my appointments. That balance is key for everybody.”

Light at the end of the tunnel

The Boardman family has been more open about Kylie’s battle now that she needs a new kidney. A website (kidney4kylie.com) has been created to help find a donor.

The Boardmans received good news in late August. Insurance was approved for a kidney transplant, placing Kylie on the transplant list. She also received a voucher through the National Kidney Registry, which she received from the organization when someone donated a kidney in her name. Through the voucher program, it allows Kylie’s case to be prioritized.

There’s a possibility she could receive her new kidney by the end of the year.

“At this point, it’s just a waiting game for me,” Boardman said. “It’s a very quiet waiting game to hopefully get a new and better chance at life. Every day, I just pray it’s out there.”

Another effect of Boardman’s condition is vision loss, which began within the past year.

“I started to notice that my vision would go away and go black, in certain situations,” Boardman said. “I thought it was a symptom from a med, because I take 15 different meds every day. My optical nerves are swollen because of IIH.”

Kylie Boardman walks through the New Gloucester Fairgrounds in New Gloucester. The former Gardiner Area High School and Central Maine Community College athlete was born with solitary dysplastic kidney disease and is waiting for a kidney transplant. (Joe Phelan/Staff Photographer)

IIH is Idiopathic Intracranial Hypertension. According to the Cleveland Clinic, it occurs when cerebrospinal fluid, which cushions the spinal cord and brain, builds up in the skull, causing pressure on the optic nerves.

“I’ve been told if this pressure doesn’t come down, it will cause vision loss,” Boardman said.

Boardman’s doctors will soon discuss whether she needs the shunt now, or can wait until after her kidney donation takes place.

Kylie Boardman now lives in Poland, with her boyfriend, Jack Keefe. Despite her current condition, she works four days per week at Serendipity Creek Childcare Center in Gray, while still making her appointments, as she waits for a donor and a new kidney.

“I’ve never been scared. I don’t get scared of much,” Boardman said. “It’s just hard. I see people planning for their future right now, and I can’t do that because I have this massive surgery that I have to plan for, and plan, for a year, to be out of everything. It’s kind of frustrating. But I’m at peace with it. I have such a good support system around me that I’m OK with the fact that it’s going to happen. And I’m OK because I have so many people around me.”