A 12-year-old Fishers boy born with a serious heart defect is on the transplant wait list.
By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@uhealth.org
Ja’Karr Ashley is a guy on the go. The 12-year-old might be waiting for a heart transplant at Riley Hospital for Children, but you won’t find him in bed very often.
“I walk past his room several times a day, and he is never in there,” laughs Maegan Boehm, Ja’Karr’s transplant coordinator. “He is always out and about talking to somebody, whether it’s another patient or the nurses, or he’s pranking someone.”
He also stays busy with schoolwork, cooking classes, special events and therapy. And of course, video games, movies and LEGOs.
Ja’Karr has been inpatient on Riley’s Heart Center since November, when he suffered a heart arrythmia incident and collapsed during music class at school in Fishers, Indiana.
That’s when transplant cardiologist Dr. John J. Parent urged the boy’s parents to consider readmitting him to Riley, saying he was not comfortable “rolling the dice” with Ja’Karr outside the hospital.
The sixth-grader has been in and out of the hospital since he was a baby after he was diagnosed with hypoplastic right heart syndrome, a rare congenital heart defect where the right side of the heart is underdeveloped.
Surgeries by Dr. Mark Rodefeld and others bought him some time, but Ja’Karr was added to the transplant list in the fall of 2015.
That’s when Boehm got to know him; at that time, he was just a precocious toddler.
“He was one of the first patients I started working with from a pre-transplant listing standpoint,” she said. “We’ve kind of grown up together. He’s such a happy kid with a smile on his face all the time.”
While he waited at home for a donor heart, Ja’Karr was lower on the priority list to be matched, but being inpatient bumps him up to 1A status.
So now, he waits. Along with his mom, dad, siblings and all his friends on 3 West at Riley.
On this latest admission, Ja’Karr has already spent Thanksgiving and Christmas at Riley. He just celebrated his birthday in the hospital last week.
His dad worries that he’ll get more restless the longer he waits.
“For the most part, he is taking it OK being here because he’s so busy, but I don’t think he fully understands how long it might take,” Jerry Ashley said.
He and Ja’Karr’s mom, LaTasha, alternate time at their son’s bedside, doing their best to support him and work with the Riley team to keep him focused on staying as healthy as possible while they wait.
“I support Riley 100 percent,” Ashley said. “At first, I wasn’t coping with the idea of transplant very well because someone has to pass away in order for my son to live, but Dr. Parent has explained it all, and I got my mind wrapped around it.”
His son’s joyful demeanor helps, he said.
He thinks I’m his Batman and he’s my Robin,” Ashley said with a chuckle. “He’s top tier. His sense of humor is like mine.”
While Ashley likes to claim the title of mayor around his son, Ja’Karr might win that race these days.
“Everyone at his school knows him and loves him. I would say here it is kind of the same,” Boehm said, throwing her support behind Ja’Karr for mayor of Riley.
While she and the team at Riley were pleased that Ja’Karr was able to stay home for long stretches during this wait for a donor, the heart arrythmia at school in the fall was a wake-up call.
“His heart is getting worse,” Boehm said. “We need to monitor him here until we can get a new heart for him.”
In the meantime, she and the rest of the team will continue to get their daily dose of joy from Ja’Karr.
“Both mom and dad have been wonderful to work with over the years,” she said. “It’s been an honor to watch him grow and to watch them parent him and grow along with him and allow us to be part of this journey.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org