Shriners Children's Ambassador Paige LaCombe sees 'light' in telling her story

Paige LaCombe thought she was going to die.

She was just 8 years old, an active little girl with a big personality who loved to dress up and put on her mother’s makeup. But there she was, lying on a bed in the emergency room, her face swollen, her lips puffy, her fever spiking to 104 degrees.

“My entire body started to blister, and the touch of the skin, I remember looking down and it was sloughing off,” Paige says.

Doctors didn’t know what to think. Was it strep throat? Or maybe pinkeye. Meanwhile, a feeling that at first had seemed like bugs were crawling inside Paige’s body was becoming more intense, almost like her skin was burning from inside out. She could see the fear on her parents’ faces.

Paige’s mom, Renee, texted photos to her sister-in-law, who is a nurse. She did some research and suggested it might be Stevens-Johnson syndrome (SJS), an extremely rare disorder that causes painful blisters on the skin and mucous membranes, as well as potentially severe eye damage.

She told Renee the nearest pediatric burn center was at Shriners Children’s Texas in Galveston, which was about four hours from their home in Scott, Louisiana. The ambulance couldn’t get Paige and her parents to that hospital fast enough.

“I would definitely not be here if it weren't for them,” says Paige, who is now 19. “I am sure any patient's going to say that. But I think truthfully, in my case, if I wasn't transmitted to Shriners from my hospital, I would've died on that bed in Lafayette because they didn't know about what I had.

“But thankfully for the surgeons, the doctors, they are so well educated, and they knew immediately how to treat me and my case. Just look at me. I mean, you would never know.”

Indeed, you wouldn’t. Paige is an extremely poised young woman with long blonde hair and an engaging smile. She’s spending this year as an International Patient Ambassador for Shriners Children’s Hospital, telling her harrowing story in hopes not only of raising awareness of SJS but also to give strength to youngsters who were bullied, as she was.

Each year, the Shriners Children’s network of hospitals cares for over 1.4 million children like Paige who have been burned or suffer from orthopedic conditions, spinal cord injuries or facial clefts. There are 20 hospitals in the United States and one each in Canada and Mexico, all of which treat patients regardless of the families’ ability to pay.

This week’s Shriners Children’s Open at TPC Summerlin supports that mission. The non-profit hospital system is the sponsor and beneficiary of the Las Vegas PGA TOUR event that began in 1983. There will be 21 patient ambassadors serving as standard bearers during the week, and Paige will also be on-site to share her story.

While she’s there, Paige will Facetime with three-time PGA TOUR champion Gene Sauers, who also battled SJS. He was given a 25 percent chance of survival when doctors finally realized what they thought was rheumatoid arthritis actually was SJS. Like Paige, he had multiple skin grafts. After a seven-year layoff from competition, Sauers returned to play the Korn Ferry Tour and later PGA TOUR Champions, where he won the 2016 U.S. Senior Open.

Paige had the most severe form of SJS called toxic epidermal necrolysis (TEN) that affected nearly 80 percent of her skin and mucous membranes. It was triggered by an allergic reaction to a new drug she was given to control her childhood epilepsy.

To date, Paige has had 21 surgeries. The first one was the most terrifying – she began bleeding internally and had to be intubated and transfused. Thankfully, Paige remembers little of that part of her journey.

When she finally woke up, “I just remember thinking, oh, okay, I'm still alive, thank God,” Paige says. During the several months she stayed at Shriners, she had multiple grafts of pig skin from her knees up to her head.

“My hair was shaved off,” Paige recalls. “It was from the scalp down. They skin grafted it with pig skin. And I was wrapped like a mummy, a typical burn patient, and all the grafts took, and my skin is beautiful.”

As she says those words during a recent Zoom interview, Paige smiles and pushes her sleeve up and puts her arm near the screen.

“So, my stomach and my back, if you look hard enough, you'll see,” she says. “And you can kind of see it on my arms too, but it's like hardly, I don't think you'll be able to see on camera. … Over the years, I mean, I've (put on) sunscreen, sunscreen, sunscreen, but over the years it's gotten better. But in my inner thighs and on my back and my stomach, you can still kind of see. But it's not bad at all.”

Paige gives tremendous credit to her care team at Shriners. Her nurses started the return to normalcy by letting her paint with her fingers and color. One day she traced her hand and wrote on her fingers: "Thank you for saving my life." She remembers that her first meal after she got the feeding tube out was mashed potatoes, “which still to this day is my favorite food.”

Although her vision was impaired and blurry, Paige learned to play songs in the burn unit on a piano that had color-coded keys. And when she had trouble sleeping as the doctors were weaning her off medication, the nurses would turn up the music beside her bed to calm her down.

“And thinking about it now, I'm like, what hospital is going to turn up Kanye West or whatever?” Paige says. “I was listening to it in the middle of the night just to help a child to go to bed. And that was amazing.

“In that process, I think my spirits wouldn't have been lifted enough if it weren't for the care and the nurses and the whole system that they have for recovery, honestly.”

Her first steps were painful, though.

“I didn't realize whenever you get skin graft, your skin's tight,” Paige says. “I remember getting out of bed and I was like, whoa, okay, this is going to take more than just hopping out of bed and going about. So that was a process.”

Paige has had 11 procedures on her eyes, as well. Each time they were grafted with Amnioheal Plus from a placenta and bolstered shut so the corneas could heal.

“And if it weren't for that, I wouldn't be able to see for sure,” she says.

Paige now wears PROSE lenses each day. (PROSE stands for Prosthetic Replacement of the Ocular Surface Ecosystem.) The gas-permeable glass lenses that are plunged into her eyes each morning help with lubrication since she doesn’t produce tears. She also has had surgery to release some tissue on her left eyelid and three rounds of laser treatments to correct eyelashes that are growing inward.

Paige admits that she wasn’t comfortable talking about what happened to her for a long time. She remembers being bullied, mostly online, by kids in her middle school class who would tell her to “go jump in a fire, go back and burn.” Counseling helped, along with the love of her close-knit family including two younger brothers and parents who’ve been with her every step of the way. She says she now sees a “light” from telling her story.

“It's transforming into not so much of a dark thing, and I'm seeing that it's helping others,” she says. “It's educating others, and it's doing a lot of healing for me and my mom and my dad, for sure.”

Paige is working on an associate's degree at South Louisiana Community College and plans to transfer to the University of Louisiana at Lafayette to get a degree in marketing. She’d like nothing better than to work for Shriners Children’s in the future.

“I just have to keep reminding myself things happen for a reason, and I'm alive and I'm healthy, and I have a great family,” Paige says. “And now with this story, I'm helping so many others, and I'm getting goosebumps right now saying it because it's transforming into this whole beautiful story.

“I actually had, yesterday, someone email me because my email is in my Instagram bio, and they said, 'Hey, I just wanted to let you know, thank you for sharing your story. I went through the same thing around your age, and it helps to know that someone else had went through that.'

“And I was like, 'Okay, it's all worth it now.'”