LOUISVILLE, Ky. (WDRB) -- Great pictures capture humanity in its purest form. They tell a story, evoke emotion and freeze life for just a moment.
Sunni Wigginton started taking pictures when she was 13 years old, and turned it into a career by loving the challenge and the art of getting the right shot.
As much as Wigginton, a 21-year-old senior at the University of Louisville, loves taking pictures -- being in them reveals a much different story.
"I’m a photographer and I don’t like getting my picture taken," Wigginton admits, cracking a half-smile, the only one she’s been able to make for the last five years.
In 2011, at age 14, Wigginton developed headaches so severe they made her body shake with seizure-like convulsions. At first, physicians in Louisville diagnosed her with migraines. But she now knows those headaches were actually the signs of an acoustic neuroma, a non-cancerous tumor growing slowly on the nerve leading from the inner ear to her brain.
"It spiders through your brain causing paralysis," Wigginton explained. "It was touching the facial nerve, so when they had to remove this tumor, they had to touch the facial nerve."
A specialist in New York City successfully removed the growth When Wigginton was 16, but it left major side effects -- half of her face was paralyzed and nerves were damaged by a condition called synkinesis.
That’s the story Wigginton’s pictures tell and why she’s shied behind her camera for so many years.
"It's really sad and it's hard," Wigginton’s mother, Dawn Wigginton, explained. "Every year, we try to figure out a Christmas picture where she doesn't have to look straight at the camera."
In 2011, the family’s Christmas card spelled out 'We Luv Jesus,' using just the feet of Sunni and her four siblings. In 2012, the family of seven put all their fingers together to make a black and white tower of praying hands.
The images each year get more and more creative and represent an outward sign of a much deeper pain. Synkinesis causes violent and unpredictable spasms as the nerves misfire in the face.
"If I squeeze my eyes really tight in the shower to keep water from coming in, instead of my eyes closing all the way, I get these spasms down my neck, to where I just can't even talk," Wigginton said.
She says they’re like a cramp, or a charlie-horse, causing tightness and constant pain.
"You'd do anything in the world to change positions," Dawn Wigginton said. "I've watched her literally go into spasms where we thought we were going to have to take her to the emergency room because she couldn't swallow, and the pain was so bad."
For five years, she's done facial therapy and had Botox. Pictures show some improvement in the movement in her face, but nothing relieved the pain.
"I've cried, I've prayed, I've begged, I've done everything to try to figure out what can we do to help her," Dawn Wigginton said.
Recently, that everything included a plea for the public's help. Wigginton had found a physician in California who pioneered a cutting-edge treatment.
Dr. Babak Azizzadeh is a world renowned plastic surgeon best known for fixing the smile of Mary Jo Buttafuoco after she was shot by her husband's mistress. Azizzadeh created the selective neurectomy procedure seven years ago as a remedy for certain patients suffering from bells palsy, synkinesis and other forms of facial paralysis. After seeing success in about 200 patients, doctors from across the country travel to study and see the technique performed in a Beverly Hills operating room for themselves.
"Acoustic Neuroma is a tumor in the brain but it’s very intimately close to the nerve that controls our facial movement and that’s the facial nerve. So when neurosurgeons try to remove this sometimes the nerves can get majorly damaged," Azizzadeh explained. "So what we are going to do in this surgery is rewire the nerves, so the nerves that are supposed to go to the right palace do their job and those going to the wrong place and doing that frowning activity will be released."
As Wigginton found potential relief and a cure from years of pain, she also learned the $40,000 surgery was considered cosmetic, and her insurance provider would not pay.
In July, her family launched a fundraising campaign. Several businesses in Kentuckiana picked a day to donate a portions of their sales to Sunni’s cause. The photographer hosted discount photo sessions and the family opened a GoFundMe page trying to raise the funds. With all those efforts combined, they raised enough money to schedule the operation in five months.
"No way we could have afforded it," Sunni’s Father, Bo Wigginton, explained on the morning of the surgery with tears in his eyes. "People were so gracious to show their support. It's just so special."
On Dec. 6, 2018, Wigginton opened up the procedure in California to WDRB’s cameras as a way to show those at home who donated to her cause how their dollars made a difference. There were about eight people in the operating room working in perfect rhythm as music played in the background.
The surgery starts with Dr. Azizzadeh peeling back a flap of skin on the right side of Wigginton's face, and burrowing down to expose the nerves. He uses a stimulator to send a short pulse or jolt to each nerve, while simultaneously monitoring readings on a monitor of what's happening under the skin and the movement from Wigginton’s face. After the shock tests, he flags nerves as good and bad, red and blue. Blue, causing a spasm or pain, will be removed.
"All these nerves are like a web going around and into one another," Azizzadeh explained while still at the operating table. "So by cutting the ones going to the wrong way you are internally rerouting the signals to the cheeks and to the real smile muscles."
Azizzadeh likens facial nerves to a giant freeway system. When he cuts one it creates a roadblock, forcing the brain and face to find a detour to work.
"This is a very, very meticulous operation. It's not ‘oh go and cut nerves,'" Azizzadeh said. "You got to know what to do, how to find them, what nerves to reduce and the activity of them because you are cutting someone's nerves."
He presented five years of research and patient data on this procedure at the International Facial Nerve Symposium in August of 2017. It’s a gathering of leading minds in head and neck surgery and eye and facial plastics. On the day of Wigginton’s procedure, Dr. Ryan Heffelfinger, a plastic surgeon from Philadelphia, observes.
It’s about two and half hours from first cut when Dr. Azizzadeh exclaims, "We’re Done!” He had identified and removed seven misfiring nerves in Wigginton’s face.
"I think it's going to be amazing," Azizzadeh said. "We found everything that I'd normally like to find so I think she will be very happy."
It will take six to 12 months for Wigginton to fully recover, but just 24 hours after the surgery there was a noticeable difference. Tears flowed from her family’s eyes in the hospital recovery room as Sunni’s smile reveals the teeth on the right side of her face that were previously hidden by her condition.
"It's okay, you can cry. I've wanted to cry all day," Dawn Wigginton reassures her daughter, while clutching her hand.
Ten days after going under the knife, there are more positive signs for Wigginton, and she hasn’t had any spasms in her face during recovery.
The Wigginton family gathered at home for their annual Christmas picture. No more hiding behind hands and feet -- this time, Sunni is front and center. Ready for this year’s picture to tell her story of the journey she faced head-on.
"It’s the story of a journey going from one end to another and just really showing the difference people can make in your lives."
A downtown New Albany boutique is supporting a young photographer in need of funding for a new, specialized surgery.
Copyright 2018 WDRB Media. All rights reserved.