Teen who needs heart transplant gets hospital visit from drag queens

Kyla Rose Robbins always knew she was different.

She would run out of breath when she ran on the soccer field. Her legs would “hurt like crazy.”

“There was a long time I told myself it was my fault,” the now 18-year-old said.

So when doctors told the teenager last June she had heart failure and a few months later diagnosed her with muscular dystrophy, it was almost a relief, she said.

“I was obviously very terrified,” Robbins said from her Duke Hospital room last week. “But I was really grateful I had an answer.”

Grateful, she said, until doctors near her home in Floyd, Virginia, told her she was not a suitable candidate for a heart transplant.

“They said she was too high risk,” her mother, Mara Robbins, said. “She wouldn’t survive the surgery.”

Robbins’ dad died of a heart attack when she was 3 years old. It’s always been just her mother and her, she said.

So mother and daughter, together with Mara Robbins’ fiancé, Dylan Brazauskas, came to Durham for a second opinion.

Between tests at the hospital, she had time to think. At home, Kyla Robbins often struggled to get out of bed, she said. One thing that made her laugh was the reality show “RuPaul’s Drag Race.”

She’d met drag queens at Gay Pride events in Roanoke, about an hour from her home. She’d even sung “The Rainbow Connection” from the Muppets movie at the event one year.

She wrote a sign on two pieces of yellow paper taped together and posted a photo on Facebook.

“Hi. I’m Kyla. Right now I’m in the Duke University Hospital being evaluated for a heart transplant. I love drag queens & would LOVE some visitors to keep my spirits up.”

She signed it #Kylalovesdrag.

On Facebook

Justin Natvig, 34, has been cross dressing his whole life.

It wasn’t until he was a teenager and walked into a gay bar that he saw men dressing in women’s clothes and making themselves up to look like women.

“As soon as I realized that, I was like ‘I’m doing that!’” he said.

Now, after winning a statewide competition last August, the Carrboro resident who performs as tall, willowy Vivian Vaughn, reigns as Miss Gay North Carolina America.

It doesn’t make him “the best” drag queen in the state, Natvig says humbly. The title, and the accompanying crown, means he’s the “state symbol of excellence.”

Last Tuesday, someone tagged him on a Facebook post from a girl in a hospital bed.

Drag queens do a lot of charity work for HIV and other causes, he said. Natvig sent friend requests to Robbins and her mom so he could talk with them. He set up an event page on Facebook inviting other performers to “Drag Descending Upon Duke.”

“If she wanted to do it, (I figured) Miss North Carolina lives 20 minutes up the street; there’s no reason I shouldn’t go and see her,” Natvig said.

“This is what we do,” he added. “We’re here to cheer people up.”

All he had to do next was wait and see if anyone would show up.

Muscular dystrophy

Muscular dystrophy is a group of inherited diseases that affect about 50,000 Americans.

In Emery-Dreifuss muscular dystrophy, the heart and skeletal muscles weaken over time, with the heart deteriorating fastest.

It’s different from Duchenne muscular dystrophy, in which patients typically die of respiratory failure at a young age, before their heart gives out.

But that was good news for Robbins, who has Emery-Dreifuss, because it means if she were a fit candidate, a heart transplant could help save her life, she explained.

Dr. Robert Jaquiss, a Duke heart surgeon, doesn’t know why the first doctors turned Robbins down.

“We at Duke have perhaps more experience with more complicated types of transplants,” he said. “And it may be we’re willing to take on trickier cases. I would characterize our approach as fairly aggressive.”

Making the United Network for Organ Sharing or UNOS list is a “multi-step, sometimes frustratingly so” process, Jaquiss said. It looks at patients’ overall health, but also their social situation.

“Having a transplant and living with a transplant is an incredibly complex process that never ends,” he said.

Jaquiss thinks Robbins will make the list.

“She’s an incredibly impressive young woman with an engaged family,” he said. “I think her chances are very good of getting a transplant.”

And the drag queen request?

Jaquiss laughed.

“I think she’s a remarkably entertaining young woman who’s got as much enthusiasm for having an entertaining life as anyone I’ve met,” he said.

Zebra stripes

Natvig sat in the Duke Medicine Pavilion lobby looking at his phone.

It was almost 8 o’clock. Natvig, in hip-hugging zebra stripes and gold-plated crown, and Jayden Starr were the only two drag queens waiting to meet the Facebook girl.

A third drag queen, Adam Ward (Lily Diva-vine) soon strode through the sliding glass door and, with a hospital social worker, they boarded the elevator for the second floor.

Robbins, wearing a black Ramones T-shirt and hooked to a rolling IV, sat in a wheelchair in the middle of a hallway. She watched, smiling, as the three drag queens high-heeled toward her. Then Natvig reached down and hugged her.

A few minutes later, Matt Ramsey (Shelita Bonet Hoyle) and Devon Mitchell (Evon Michelle), arrived, from Charlotte. They pulled up chairs in the conference room and sat in a semi-circle around Robbins, who began to tell them her story.

“That explains why she likes drag queens,” said Ramsey, a buxom redhead in a Kermit-green blouse. “Most of us look like Muppets. Think about it.”

Everybody laughed, but Robbins wanted to explain her request to her visitors.

“I have never met a drag queen who was anything but kind,” she began softly.

“And recently, honestly, it gets really depressing. I have to be really careful. I had a TIA (Transient-Ischemic-Attack). I didn’t even know; that’s like a mini-stroke. ... Having something that makes me happy is really important.”

You’ve got a drag queen army now, one of the visitors said.

“We are Militia Etheridge,” said Natvig, not missing a beat.

Going home

The next day, pictures on Facebook began getting likes from California, Florida, England and Australia.

“It’s been amazing, the outpouring of support,” Robbins said. “The whole drag community has been so kind and generous.”

Ward (Lily Diva-ine) had even given her a swirly, silver hair pin after he’d bent down to say goodbye and his pink wig got stuck in Robbins’ hair. “This is probably meant for you,” he told her.

Robbins will stay at the Ronald McDonald House a few days before returning to Floyd for the wait. But she’s going home with more than the hair pin.

“I want to go to college,” Robbins said. “I want a chance to go out and live and learn about who I am.”

After the doctors in Virginia turned them down, Robbins had told her mother they had to face reality.

Now, she’s facing a future.

“We came here to get a second opinion,” she said. “And the second opinion was automatically ‘You will survive this.’

“I have hope for the first time in a really long time.”

This story was originally published March 23, 2016 at 2:42 PM with the headline "Teen who needs heart transplant gets hospital visit from drag queens."