John Clark was an active second-grade student in Mars Area School District and a baseball player in his youth baseball league when he contracted a heart infection after a routine dental procedure.

The Pokemon fan loved Brazilian jujitsu, spending time in the outdoors, visiting his grandmother and going to school, said his father, Jarrod Clark. John would clamor to get his homework done on his way home from classes, Clark said.

Now at Children’s Hospital of Pittsburgh, John attends school for about an hour each day through a hospital-based educational service offered through Pittsburgh Public Schools as he waits for a new heart.

The wait has now surpassed 144 days, Clark said.

After worsening illness following a dental procedure in November 2023, John was airlifted to Children’s Hospital of Pittsburgh from UPMC Passavant, beginning a series of emergency surgeries and medical interventions to save his life.

Doctors at Children’s Hospital determined John’s infection was in his heart and performed emergency open-heart surgery, which he had to undergo again in December.

After the initial surgery, recovery seemed to be going well, his father said, but a CT scan showed John had also suffered a massive stroke around the same time as the surgery.

After being discharged in late November, John returned to the hospital in early December.

It was then determined another open-heart surgery would need to be performed.

John now uses a form of life support called extracorporeal membrane oxygenation, or ECMO, that provides support to his heart as he waits for a transplant.

“He’s on full mechanical support for his heart,” Clark said. “If we left the building, he wouldn’t survive.”

At one point, the machine failed. John went into cardiac arrest, and doctors had to manually pump his heart.

“The heart surgeon who had just left 20 minutes earlier, he was sticking around, it was 2 a.m., had to turn around and come back and perform yet another life-saving emergency surgery,” Clark said.

Clark said his son was in a coma for 20 days.

“Ever since then, we’ve been working on getting him to recovery,” Clark said

“We knew at that point in time that he’d need a heart transplant,” he said. “His heart most likely was never going to recover.”

Doctors also had to amputate one of his legs after experiencing complications due to going into cardiac arrest. Waiting for a heart transplant is the main priority in John’s recovery, after which a prosthetic will likely be used.

“We took the approach that we had to be completely transparent with him,” Clark said about his son’s medical situation. “We can’t sugarcoat it. We can’t say, ‘Everything’s going to be fine.’ We just let him know upfront, ‘Hey, there are going to be changes, this is happening, and we’re going to work through this together.’”

“I asked him, ‘Hey, how does it make you feel that you’re going to have a prosthesis, or that you’re missing a leg?’” Clark said. “He’s just kind of like, this is the situation I’m in, and we have to push through it, and I’ll adapt and change. He’s really lived his life that way. He was born with some missing fingers, and he’s just had to learn to adapt from the very beginning.”

“He’s a kid who listens and pays attention to everything, even though you don’t think he is,” Clark said. “He struggled at first. It was tough.”

“Ever since he was born, we’ve always talked to him about differences in people and acceptance,” he said. “This is just something else that reinforces that people are different and have differences that don’t make them any more or less of a person.”

Through the waiting period, John remains determined. The first thing his son wants to do when he returns home is sleep in his own bed, Clark said.

“He’s been unbelievable,” Clark said. “He’s been going to school while here, doing great in physical therapy. He seems to be back to his normal self except for the situation that we’re in.”

John has had four offers for a heart transplant, but the family still waits for the right offer: The transplants have either been too far away, or not the right size. Timing and size are both critical factors to ensure a heart transplant’s success.

“We’ve been on the waiting list for (over) 132 days, and that weighs on you,” Clark said.

“It’s been very emotional,” he said. “We had no idea if (John) was ever going to wake up (from the coma) and the decisions we had to make. But my wife and I, we just talked and we said, ‘Hey, we need to make the next best decision.’ We can’t think too far into the future. Let’s just make the next best decision we can and keep moving forward.”

The response from the community has helped the family stay grounded, despite the circumstances.

John, who is a member of Boy Scouts, has received a card from his troop every day, his father said.

“They’ve done that for 100-and-some days,” he said.“It brightens his day. His teachers have come down and visited him, and spent hours with him. His Mars baseball team coach provides updates on how the team is doing even though John couldn’t be there.”

The last time John’s teammates from the Mars Baseball Association saw him in uniform was at the team championship last fall, said Kori Szelong, a parent of a child in the youth league. Along with other parents and community members, Szelong organized a fundraiser selling heart-shaped stickers that bear John’s initials and can be posted on batting helmets. High school baseball and softball players also have worn the sticker, she said.

Friends of the Clarks have also started organizing meal trains for the family and have set up a GoFundMe to help raise money toward medical expenses. Clark said he and his wife, Megan, alternate days spent at the hospital with John.

Rachael Baumcratz, of Mars, has known the Clarks for nine years. Her son, Colton, was in the same day care as John starting at three months old.

“My husband has taken Colton to see John at the hospital a few times,” Baumcratz said. “I think that’s helped John. It’s definitely helped Colton, because he was very upset about everything that’s been happening.”

“Before John was put on the transplant list, Colton went and visited right after his initial surgery,” Baumcratz said. “That was the first time that Colton had ever really seen anyone in a hospital setting like that. None of his grandparents have ever been sick like that. My husband said that he cried the whole way home from the hospital.”

John’s father has helped send pictures of John and shared how to explain health updates to Colton, Baumcratz said.

“When he comes to see John like this, now he can see that John is enjoying him being there. So he wants to go. Whenever he comes home, he’ll be like, ‘When’s the next time we can go see John?’”

Shelly Suski, a family friend from Adams Township, helped set up the GoFundMe fundraiser.

Suski’s son, Greyson, is in the same 8U league as John, she said.

“I’d describe (John) as a happy-go-lucky, positive kid,” she said. “He’s very cup-half-full. He gives the best hugs. When he got sick, my son said, ‘The last time I saw him, he gave me the best hug.”

Suski, who works in the medical field as a physician assistant described the medical situation as a “zebra case.”

“It’s something you learn in medical school and never think is going to happen,” she said.

“He had a routine dental procedure done,” she said. “Everybody has different bacteria in their mouth, and sometimes during procedures, what can happen is bacteria can get in the bloodstream and travel directly to the heart. It’s always a risk, but it’s more of a risk for kids or adults who are compromised or have an underlying heart condition. As far as we know, John didn’t have an underlying heart condition. The statistics are truly 1 in 100,000. It was unexpected.”

“Growing up, my mom told me that you’re only as happy as your saddest child,” Suski said. “I think it’s the same with a sick child.”