Mississippi's champion: Ava Clarke Edney's ability continues to shine

In many ways, Ava Clarke Edney is your typical 16-year-old. She’s on the homecoming court. She performs in two show choirs and plays drums, xylophone and timpani in her high school band. A member of several academic clubs, she’s an honor student, too.

Ava Clarke is also an African American born with oculocutaneous albinism, a genetic condition characterized by little to none of the pigment that determines eye, skin and hair color. That pigment, melanin, also plays a role in vision and has left the teenager legally blind with repetitive, involuntary eye movements and astigmatism.

What many might call a disability, though, Ava Clarke sees simply as a difference.

“I feel like the word disability is genuinely so limiting,” she says. “People with quote-unquote disabilities or differences are able to do anything they want to do. … So, I kind of preach that it is a difference because yes, we do have things that are maybe a little bit more limiting, but it's not stopping us from doing anything.

“And so, we're just a little bit different from everyone else.”

Since she was born on Easter Sunday 16 years ago, Ava Clarke has been treated at Children’s of Mississippi in Jackson, the same city where this week’s Sanderson Farms Championship is being contested. Earlier this year she was selected as the Children’s Miracle Network Hospitals Champion from Mississippi and is sharing her story on a national stage.

Children’s of Mississippi, which serves more than 200,000 kids each year, is the primary beneficiary of the Sanderson Farms Championship. The tournament is hosted by Century Club Charities, which has raised over $24.5 million for the hospital and other local charities since 1994.

Ava, who wants to become a sports journalist and would love to become a sideline reporter at NFL games, will be a guest of the tournament on Wednesday at The Country Club of Jackson. She’ll get to walk inside the ropes during the pro-am with defending champion Luke List.

List’s son Harrison was treated at Children’s Hospital of Georgia in 2021 after he contracted a serious case of RSV. Two years later, when List won the $250,000 RSM Birdies Fore Love competition, he donated the entire amount to that hospital for the expansion of its Pediatric Intensive Care Unit.

Play Yellow is an initiative to raise money for CMNH – more than $100 million since 2019 -- spearheaded by Jack and Barbara Nicklaus and the PGA TOUR.

Ava admits she is not as familiar with golf as she is with football – “we’re a football family,” she says – but she’s learning about the game from a friend at school who is on the girls’ team. “Now that I've started working with the hospital, I have definitely started trying to learn the ropes,” she says.

Children’s of Mississippi has been extremely important to Ava and her family. Her mother Shala spent 15 years there working as a clinical instructor in the radiology department. Like Ava, her older brother Alvin was born there in another holiday birth, this time on Christmas Day.

Ava has been a patient at Children’s of Mississippi since she was three months old and doctors told her parents she was blind. She’s been treated in the pediatric dentistry, genetics and ophthalmology departments and says, “each section that we've had to work with has really impacted my life so much.”

While her vision has improved from the initial diagnosis, it fluctuates and likely will continue to do so throughout her life. According to WebMd.com, a person who is legally blind has a vision that is 20/200 or worse. Children’s of Mississippi has helped Ava cope.

“Working with the hospital, honestly, they have relieved all of my doubts,” she says. “I've definitely had really tough times when my vision had gotten increasingly worse and I was very concerned being scared, knowing that I was born blind. I didn't know what would happen if I would lose my eyesight completely.

“And so, they were definitely there to comfort me and my family so much. Not only have they helped me with my medical differences, but they've also helped me and my family so much mentally just getting through things. Me and my mom always make this joke that some of our doctors’ visits turned into therapy sessions because they were there to guide us through it and take care of us and make sure that we were okay, and we knew that it was all going to work out.”

Children’s of Mississippi connected Ava and her family with the Mississippi School for the Blind in Jackson. They have helped her navigate a series of gadgets that magnify and enlarge words so she can read them. The paper she writes on has bigger lines and she also uses pencils with darker lead after her family realized she was getting sores on her fingers from trying to bear down so she could see the letters.

Ava is getting a head start on her ultimate career goal by participating in the Northwest Rankin Convergent Media Academy, a four-year program focused on digital media arts, marketing and communication. But when she found herself in front of the camera a year ago to deliver the “Northwest Minute,” Ava realized she couldn’t see the teleprompter.

“I was really upset, kind of frustrated, but I told my media teacher, I was like, I want to do this,” the high school junior says. “This is something that I'm really passionate about. … So, I was like, don't excuse me from this grade. Let me do it. …

“I ended up memorizing all of our scripts for media and getting it done without the teleprompter. I would stay up late at night, make sure I had all the lines, make my mom read them back and forth with me, and we got them done and all of the videos were great.”

Ava says her unique appearance at times has prompted rude comments but “I just learned how to overcome it because I knew I was better than that.” What those people may not know is that Ava has carved out a very successful modeling career that began when a photographer noticed her and her mom at the grocery store.

“My mom being very protective of me at the time, I was so young, but also I had such a big difference, and not everyone was very accepting of it, she didn't really know what to expect or what to think,” says Ava, who was 3 at the time. “She was like, no, I'm not doing this. I don't feel comfortable doing it. I don't want my daughter modeling.”

But the photographer gave Ava’s mom Shala his information, and several months later the two were in touch. Ava did the photo shoot, and when the pictures were posted online, they went viral. She has since appeared in ESSENCE and VOGUE, as well as Beyonce’s visual album “Lemonade” in a highly secretive shoot.

“(Her team) explained that a celebrity wanted to work with me, but they didn't tell us who,” Ava recalls. “… They told us that the celebrity that they wanted me to work with, her name started with a B. And so, we were trying to go through names, guessing who it was, and she showed up on set and our jaws were dropped.

“We didn't know what to do. I was so young. My mom was there, my brother was there, and he had the biggest crush on her. So, we were just absolutely in awe. And then we started working together. We did some shoots together. She took me to the VMAs with her in New York, and it was honestly just an amazing, unforgettable experience.”

Ava, who was a pointe-level ballerina before giving up dance several years ago, has also appeared in “Logan,” the Wolverine X-Men movie, as well as Netflix’s “A Little Help with Carol Burnett.”

So, is there anything she can’t do?

“I don't think so,” Ava says. “The hospital has helped us so much with overcoming my differences and allowing me to be able to accomplish things I didn't think were possible. And now I'm doing all the things I love.

“I will say though, a fun fact, I never learned how to ride a bike, so I guess there is something I can't do.”

Don’t bet against her mastering that as well, though.