QC girl, 14, an influencer for Phoenix Children's

Apr. 9—Queen Creek resident Hayden Lichtenberg is pretty much your average 14-year-old middle school student, with her eyes on the future and dreams of making it big on social media.

"I want to be an influencer," Hayden said.

Influencers are people who have established some level of credibility on social media, and by virtue of their expertise on a particular topic or product, have attracted a following that look for direction or advice.

Without realizing it, though, Hayden is close to already becoming one.

On Wednesday, she will have the opportunity to influence people in a way that she is probably not even thinking about. She is just excited about being in the spotlight, and being a star.

"I'm going to be on TV," she said of her upcoming appearance on the 11th annual ABC-15 Phoenix Children's Hospital telethon, scheduled to be on the air from 6 am to 10:35 p.m. Wednesday, April 12.

"I get to be in front of the camera," she added.

Hayden was born with a condition called VACTERL association, which affects more than a half dozen of the body's critical systems, including the spine, heart, digestive system, trachea, kidneys, and lungs.

To be considered to have VACTERL association, a person need have only three of those systems affected. In Hayden's case, all of them are affected — which impacts how she is nourished.

"Many children will have feeding difficulties and require a feeding tube," said Dr. Nathan Page, an otolaryngology pediatrician and head of head and neck surgery at Phoenix Children's Hospital — and one of Hayden's doctors.

"All will require medical treatments and surgeries — often multiple surgeries. At Phoenix Children's, we always try to coordinate between a patient's many specialists to combine operations and ensure that we have a cohesive treatment plan," Page added.

Only one of between 10,000-40,000 infants born with VACTERL association. Hayden was also born without ears and has prosthetics to help her hear.

Still, she has a life that seems remarkably similar to other kids her age.

"Many patients can have quite an excellent quality of life," Page said. "They face many challenges, especially in infancy and childhood, but with appropriate care and strong family support, they can go to school with their peers and participate in a variety of activities."

Hayden goes through a step-by-step process every night to clear her intestines before bed and manage a handful of other important details.

But to hear her talk about herself, she really does not see what all the fuss is about.

"Every night I do my medical routine," she said. "I don't really think about it that much. I like to go shopping and do

YouTube."

She admits to having her entire closet filled with clothes and shoes, but loves to shop. Her mom Stacy said Hayden also attends youth group programs at their church.

"We've really made it a priority to

not let her medical status get in the way of her life as much as possible," Stacy Lichtenberg said. "We've built her to

live a life as normal as possible without limiting her."

Hayden has gotten the message.

Limits do not seem to be in her vocabulary or on her horizon. She is an expert on medical issues that most people do not understand or even think about, but has turned this host of physical challenges into an opportunity to help raise money on the upcoming telethon for kids like her and others who are suffering other various challenges.

"Every day, kids dealing with congenital heart defects, skeletal dysplasia, leukemia and other complex health issues visit Phoenix Children's for critical lifesaving medical care," the hospital says.

"You have the power to make a difference today by becoming a Hero for Hope with a monthly donation of $20, or a one-time gift of $240, a superhero sidekick will be delivered to a Phoenix Children's patient in your name," it said of one suggested donation people can make during the telethon or online even before it starts.

Hayden does not talk a lot about VACTERL association.

The Sossamon Middle School student would much rather focus on pep rallies, student assemblies, and watching the cheerleading routines at school.

She is more intent on talking about things most 14-year-old girls are interested in.

"I like to dance, Tik Tok, (make and) edit videos, draw, and go hang out by the pool," she said. "I am in dance class at school. Right now, we are starting a hip-hop dance routine for an upcoming recital."

While Hayden is all in on the dance routine, her mother says Hayden's physical differences can make her have to work a little harder than most to perfect it.

"Sometimes she has to work through pain dealing with her anatomy, with her spine," Stacy Lichtenberg said. "Also, her lung capacity is not good, either, so sometimes it takes a little bit more for her than the student next to her. But she keeps up and does phenomenal."

Hayden is one of four Lichtenberg children, who range in age from 3-16 years old. Mom Stacy calls herself and her husband "the best team out there," staying organized and keeping the family running like a well-oiled machine.

"We really balance the life of Hayden and the other kids," Stacy Lichtenberg said. "My life changed real fast with her. It changed how you look at life. I now look at life in a totally different light.

"Even day to day, our weeks are filled with doctors' appointments, therapy, pharmacy runs. You name it. We got it going on. Keeping her up to date in school. We pretty much have it down to a routine. We are a duo," she added.

Gifts given during this year's telethon to the Hope Fund are invested in state-of-the-art equipment and technology, cutting-edge research and clinical trials, innovative clinical programs, and family-centered services.

"Sometimes we need resources to fund research that wasn't planned, when we're onto something potentially lifesaving and we can't wait," Steve Schnall, senior vice president and chief development officer at Phoenix Children's said.

When pressed, Hayden admits that if the full-time, professional influencer gig does not work out, she may consider pursuing her fallback career plan.

"I want to be a heart surgeon so I can help others," she said.

Added her mom: "Even though there are differences, they are still humans. They still want to be loved and a big thing in our family is giving back. Giving back to places that have made our journey just a touch easier.

"I want the donors to know PCH is not just a big organization with no names and no faces, she added. "There are all these little kids that have a life that they were given that is unimaginable, but every day kids like Hayden get up and ... she doesn't know the difference.

"PCH is a phenomenal organization, but when you break it down, there are

faces behind PCH and it is the faces of these kids."