A single dad and his daughter navigate her heart transplant — and a lack of cheese

How can someone have a failing heart yet be all heart? Meet 9-year-old Mya Coleman.

When I arrived at the Baltimore home she shares with her father, Alfred, she was nestled into the couch in the cozy living room, posing for pictures as they joked around and made each other laugh.

“You look beautiful today,” he told her.

“Why do you have gray hair?” she shot back.

More laughter. You can tell there’s a lot of that in this house — and they need it. For a time this winter, the Colemans’ story was more a tragedy in the making than a comedy.

Mya was diagnosed with a previously unknown congenital heart defect, making the once-energetic kid in crucial need of a transplant. Since then, she and her dad have had to navigate a new life of caution, doctor’s appointments and financial worries. But Mya’s strength, faith, pluckiness and a healthy helping of good old-fashioned stubbornness have sustained her so far. What’s that they say about laughter being the best medicine?

“Even during this time, her heart was still strong,” Alfred said, beaming at his daughter from a nearby chair. “We’re a team.”

“She is so full of energy,” said Consuela Thompson, a pediatric nurse practitioner at Johns Hopkins Children’s Center who has worked with Mya since she was in the hospital. “Initially, when you see her, she seems quiet and reserved, but she’s got this incredible sense of humor. She’s very astute, inquisitive. She wants to know how everything works.”

Before her unasked-for crash course in heart health, Mya was an active little girl with a busy schedule of school, tutoring, church and praise dance. But one day a few months ago, she could not stop vomiting. A doctor at an urgent care clinic diagnosed her with strep throat and prescribed antibiotics. But 24 hours later, when she still wasn’t able to keep food down, Alfred took her to Hopkins.

She would not leave for months.

Thus began a nightmare of fear, uncertainty and misdiagnosis. At first they were told “she had a bad liver,” Alfred said, but ultimately the real cause was discovered. “[Medical professionals said] we gotta move her right now, immediately, to the cardiac ICU, because she could be ready to go into cardiac arrest at any time. Now, we were looking for a miracle.”

That miracle was eventually determined to be a transplant. Alfred, a self-employed handyman, spent most of his time at the hospital with his child. He started going home at midnight to try to rest, but would turn around and go back at 2 a.m. “If I’m not there, she’s gonna die,” he thought.

As a parent, I cannot imagine the emotional whiplash of thinking your kid has a common winter viral illness and, within days, finding out you might lose them.

“I meet families at an incredibly challenging time, under extreme stress,” said Thompson, who has been at Hopkins for 20 years and in her current role for about six. “I am now telling you that your child’s heart is failing and that they need a transplant to be able to live and leave the hospital.”

Thompson said initial misdiagnosis is unfortunately common in kids with no previous heart issues. “It’s not the immediate response to think of heart failure when a patient presents very well prior to this.” And because Mya’s birth mother was adopted, the 9-year-old’s full genetic history is a bit of a mystery.

“It’s just been Mya and me,” said Alfred, 64, who has raised his daughter alone since birth. A Washington, D.C., native who has been in Baltimore for a decade, Coleman is candid about having recovered from a drug addiction, during which time he met Mya’s mother.

As the father of two sons in their 30s, he didn’t expect to bring home a new baby at 55, an age where it’s more likely to have an empty nest. But when Coleman got clean, and Mya’s mother didn’t, he knew what he had to do. “I said, ‘Lord, you gave me this baby. I’m an older guy,’” he recalled. “But I heard him say, ‘I’ve done this for others, and I’ll do the same for you.’ That helped me process it.”

Mya’s mother died in 2020. Since then, she and her dad have visited her grave each Mother’s Day, then getting a hotel and making a weekend out of it. Mya’s condition made that impossible this year, but they hope to resume the tradition in 2025. The death made Alfred even more resolute to provide the best life for his daughter, but suddenly, he found himself helplessly watching his little girl become very, very sick, hooked to an IV, unable to eat and in need of several blood transfusions.

“We did everything right, but that didn’t stop her from having a bad heart,” he said. Mya told me most of her memory of that time is “being asleep,” but her father’s recollection is much more stark.

“She said, ‘Dad, I don’t wanna disappoint you,’ like if she leaves me, I have no one,’” he said softly. Can you imagine knowing your child is not only aware of her own mortality, but innately afraid of abandoning you? “It’s unbelievable,” he said. Still, he knew, “this is not what she came here for.”

Their miracle transplant finally came six weeks and five days after being admitted, her father said. None of this seems fair, for this child to have had so much loss in her short life and for this man to risk losing this light, this human purpose he never expected. But, Alfred says, “It’s the job that God gave me. He said, ‘Nothing was made easy for Jesus or for you.’ It’s up to us to make the best run we got.”

“He takes care of me,” Mya explained. “He loves me.” That love, and that laughter, has done wonders. Mya is now about three months post-transplant, and is “thriving,” Thompson said, though she cautions that heart transplants are not a cure. “Recovery isn’t straightforward. It’s a journey, with all kinds of dips and turns. I hate when people say, ‘Now you get to go back to your normal life.’ There is no normal.”

The Colemans’ new normal has meant the ending of their old reality and an even more pronounced appreciation of the time they have together. “We know that everything is special,” said Alfred, who closely monitors his daughter’s new routine, including regular meds and twice-weekly trips to Hopkins. Her immunocompromised state and medication “doesn’t support all her running and jumping,” he said, and Mya’s exposure to people and sunlight is limited. She also has new dietary restrictions, including one that particularly irks her in a very 9-year-old way.

“He threw away my cheese sticks!” she said. As a lactose intolerant middle-aged woman, I feel her pain. She does get an occasional treat — “Yesterday I had a quesadilla!” — but there have been other big changes.

Mya finished the school year with an online program because Alfred was worried about sending his medically fragile daughter to a large class. He’d like to find a smaller private school, but he’s unable to work as much as he needs because he also has to be by Mya’s side. The family has started a GoFundMe page for assistance.

That’s why Deb Burks, whose grandson was in Mya’s class, reached out to The Baltimore Banner about the Colemans’ in the first place. She hoped that “by sharing her [Mya’s] story, our greater community might be able to help this sweet family. … She is a ray of sunshine to her classmates, their parents and her teachers.”

That sunshine also beams on medical staff members like Thompson, who was tickled to learn that Mya named her transplant “Mya Two.” She said she hopes they “become best friends, live together, and get to know each other.” What she ultimately wishes for Mya is more milestones, from school plays to proms. “All those things are why we do these surgeries. I can’t wait to see the things that Mya does, where her life takes her.”

Alfred Coleman wants all these things for his little girl, too, trying to be realistic but also optimistic in equal measure. “There is no promise for tomorrow. … She may not live 30 years, or have a job, or have kids,” he said. “You have to enjoy all you can.”

That realization is, pardon the pun, heartbreaking. But the Coleman family isn’t putting any limitations on their miracle.

“Me and Mya, we’re trying to write a new story,” Alfred said. An estimated 50% of pediatric transplant patients die after 15 years. “But what about the other 50%?” he asked.

My money’s on Mya — delicious laugh, occasional cheese stick and all.