Jarales boy in need of heart transplant

It started with a simple virus — just a virus, is what the doctor said. It will pass.

“Remember how they tell you, ‘If your kid has a fever for a long time, you need to go to the hospital?’ This is why,” says Anna Moya.

She watches her 8-year-old son, Hunter Rael, of Jarales, as he plays a game on his phone sitting on the sofa next to her. He looks like a typical third-grader but he has spent the last three years in constant danger of having a heart attack.

The diagnosis

Three years ago, after more than a week of a persistent fever and no answers, Hunter’s regular doctor told the family they should seek care somewhere else.

Somewhere else was Presbyterian Hospital on Nov. 1, 2022, when Hunter was admitted. After six days in the intensive care unit and four more in regular care, the family was given the news.

Hunter had Kawasaki disease, which is typically marked by a fever of more than 102.2 degrees for five days or longer, along with other symptoms such as a rash and enlarged lymph nodes in the neck.

According to the Mayo Clinic website, the exact cause of Kawasaki is unknown but treatment within 10 days of onset is key to reducing the chances of lasting damage to the arteries that supply blood to the heart.

“I wish we would have caught it sooner. We might have been a little bit better than where we are now,” said Moya. “He has a severe case of Kawasaki disease.”

Doctors at Presbyterian told her and husband, Patrick, that a delay in Hunter’s care by even a day or two would have led to his death.

“It’s a miracle he’s here. He’s a miracle,” she said.

Miracle or not, Hunter now needs a new heart and on Monday, Moya and Hunter flew to the Colorado Children’s Hospital in Denver to begin the lengthy process of being evaluated and put on the heart transplant list.

The burden of treatment

Since he was 5 years old, Hunter and his mother have been making regular trips to the hospital to monitor his condition since there aren’t doctors in New Mexico who specialize in the rare disease, which causes inflammation of the arteries to the heart.

“He’s always on the verge of a heart attack. He can’t do anything that raises his heart rate. No running. No football. No baseball,” said Moya.

Even a good old-fashioned belly laugh could trigger a cardiac event.

During his most recent trip to Colorado, tests showed Hunter wasn’t eligible for a coronary bypass, a procedure the family had hoped would prevent the need for a heart transplant.

“We went for our six month CT scan and they noticed Hunter’s left coronary artery was completely blocked, so the right side was doing all the work,” Moya said.

Further testing showed the right artery was almost fully closed as well, meaning a bypass wasn’t an option.

“His only next step is a heart transplant,” his mother said.

For the last three years, Hunter has taken seven medications a day to keep his heart as healthy as possible, graduating from compounded liquids to pills and tablets, which help ease the family’s financial burden.

Because of his age when first diagnosed, Hunter couldn’t swallow pills, but liquid heart medications had to be paid for out of pocket.

“We had to pay for all of them, so every 15 days, at $25 a pop,” Moya said. “Him being able to swallow pills has been a huge benefit.”

There was also a year of abdominal injections of a blood thinner she had to give him every 12 hours, leaving Hunter purple and blue.

“That was a little more than three years ago now, and he’s been pretty stable,” she said. “Looking at him, you wouldn’t think he’s sick, but he is — he’s so sick.”

The waiting begins

Once he is on the transplant list for a heart, the real waiting begins. Moya said Hunter is very aware of what it means for him to get a “new heart” — the loss of someone else’s child.

“We try not to dwell on that part. We just can’t,” she said. “We pray we get a new heart soon, and we know what that means. Hopefully, he gets it before he gets sicker. That makes for a harder recovery all around.”

Because his health is so fragile, Hunter’s doctors don’t want him in school this coming year.

“We just got him on a good routine with school, because he’s missed so much already, and now he can’t go because of how severe things are,” she said. “We have to watch him 24 hours a day and I can’t ask the school to do that. It’s not fair.”

A transplant will completely restore Hunter’s health, allowing him to be the kid he very much wants to be — one who plays baseball, runs, rides roller coasters and goes to school.

“There will be new arteries, new everything. He will still have to take medication after the transplant, but I’m not sure what else. I don’t know the whole process,” Moya said. “Nobody in my family has ever done this before.”

Hunter leans into his mom for a hug.

“There’s always a first time,” he says.

Raising awareness

This will be a first for her family, but Moya hopes she can raise awareness so it won’t be the same situation for another family.

“If your child is running a fever and it’s not going away, have it checked. It’s easy to misdiagnose,” she said.

As for the family doctor who told them to seek treatment elsewhere?

“I don’t blame nobody. We still see her. She’s a wonderful lady. It’s not her fault,” Moya said. “But if your kid isn’t getting better, please, please seek someone else. Even doctors that know everything don’t know everything.”

Hunter’s father, Patrick, will need to stay in New Mexico to continue working and taking care of Hunter’s 5-year-old little brother, Noah.

“We could be up there for four months. We just don’t know,” she said.

Family and friends have already volunteered to come stay with Hunter during his recovery, but Moya isn’t having it.

“I’m not leaving,” she said. “I’m not coming home until Hunter gets to come home.”

To keep up with Hunter’s progress, join the public Facebook group “Hunters Heart Transplant Journey.”