2024 Children’s Miracle Network Hospitals Champion Ava Clarke Edney celebrating differences

Published on Monday, February 5, 2024

By: Annie Oeth, aoeth@umc.edu

Photos By: Joe Ellis/ UMMC Photography

Ava Clarke Edney, as Mississippi’s 2024 Children’s Miracle Network Hospitals Champion, will encourage acceptance of the unique differences among us all.

Ava Clarke, 15, a Northwest Rankin sophomore from Brandon, has been a Children’s of Mississippi patient since infancy, when she was diagnosed with albinism, a condition in which the body produces little to no melanin.

In addition to determining eye, skin and hair color, melanin plays a role in the development and function of the eyes. Ava Clarke is legally blind with nystagmus, or repetitive, involuntary eye movements, and astigmatism, which causes blurred distance and near vision.

Her Children’s of Mississippi care has included general pediatrics, pediatric ophthalmology, pediatric genetics and pediatric dentistry.

"I believe I have the best team taking care of me every time I go to the children’s hospital for any reason,” she said. “I feel safe there.”

Children’s of Mississippi is the pediatric arm of the University of Mississippi Medical Center and includes the children’s hospital in Jackson as well as outpatient clinics around the state.

Ava Clarke exemplifies her belief that differences should be embraced, and she may look familiar. She started modeling at 3 with a photo shoot that went viral.

“I've enjoyed modeling my whole life,” she said. “Some of my earliest and best memories are of me working on set. I've had great opportunities including being featured in ESSENCE magazine, Vogue, and Teen Vogue. I've worked with Beyonce twice! The experiences with her are definitely the highlight of my career so far. In addition to working with Beyonce, who is the biggest mega star in the world, I've worked with other influential people who saw the importance of highlighting albinism and my unique differences to the world.”

Every year, 170 local Children's Miracle Network Hospitals choose a Champion in each of their local communities to serve as the face for children treated at their local children's hospital. These ambassadors spend their year advocating for children's hospitals across North America.

“Ava Clarke enjoys speaking to other young people about the challenges and differences she's overcome in her life,” said her mother, Shala Edney. “She’s looking forward to representing Children’s of Mississippi.”

Dr. Ruth Patterson, associate professor of child development, thinks her former primary care patient will be an excellent Champion.

“Ava is such a wonderful, strong and kind person,” Patterson said. “She leans on her inner strength and refuses to allow her health challenges to be a crutch, but rather, uses these challenges as a platform to empower others to be confident in challenging the world as it defines what is normal, acceptable and what can be celebrated. For example, she has used her diagnosis of albinism to redefine what the world sees as beauty and fashion. Ava has not allowed her vision impairment to in any way minimize her gentle but strong voice as she advocates for herself and others.”

Dr. Nils Mungan, professor of ophthalmology, agrees.

“I have been seeing her since she was a newborn and she has a permanent severe vision impairment because of albinism, which is a lack of pigment in the skin, hair and eyes,” he said. “Despite this, she has always been very cheerful and outgoing. She always brings joy to all those around her. It is no surprise that her personality and beauty led to an early career in modeling. She is very bright and mature beyond her years. Everything she says and does is done with great love and gratitude. Her positive can-do attitude is an inspiration to all she meets. I am so proud and honored to be her doctor.”

Dr. Sara McCrary, an assistant professor of pediatric dentistry and community oral health, said Ava Clarke has always been special.

“She exudes confidence, joy and has such a presence about her,” she said. “In the face of adversity, she has shown such grace and determination to achieve her goals and dreams and she is only 15! I once read something that said, ‘Live life kind, grateful and faithful.’ This embodies Ava Clarke and her family.  Mississippi is blessed to have this sweet and positive role model, and I can’t wait to see all the wonderful things she does in the future.”

A model and actress as well as an honor student at Northwest Rankin’s Convergent Media Academy, Ava Clarke hopes to earn a degree in marketing and public relations from an Ivy League university and embark on a career as a marketing executive for a luxury merchandise firm or a live sports reporter.

The accomplished teen was a pointe-level ballet student at Mississippi Metropolitan Dance Academy and now performs with The Allure and The Ambassadors, both award-winning choirs at Northwest Rankin. She’s a percussionist in her high school band, playing the drums, xylophone and the timpani.

Her acting credits include a small role in “Logan,” the final Wolverine X-Men movie starring Hugh Jackman, an appearance on the talk show "A Little Help with Carol Burnett” and being a cast member of the digital “Abercrombie Kids Kind Crew” on Nickelodeon’s YouTube channel.

In her down time, Ava Clarke enjoys drawing and painting as well as traveling, shopping and spending time with friends.

Ava Clarke said she’s anticipating a full year of representing Children’s Miracle Network Hospitals and Children’s of Mississippi.

“I'm honored and excited,” she said, “and will use my voice to advocate for other patients and people with differences. I look forward to making new connections and doing the work that God has set before me. The Children's of Mississippi staff and my medical team have done so much for me through each phase of my childhood. I want to do my best to raise funds for others in need of excellent health care.”