Eyeglasses black. Hair gone, leaving a shiny reflection from his shaved head as counterpoint to go along with his youthful goatee, which shows a splash of grey.
His eyes red and watery, his voice scratchy and trembling, he says, “I cry in my pillow at night when no one is around.”
These were the words of Karlos Patton, a Grambling State University professor in Student Success, who is acting as the voice of his possibly terminally ill daughter.
Kyia Simone Patton is in for the fight of her life after being diagnosed with nephronophthisis four days after her 13th birthday in September.
The genetic disease of the kidneys that results in renal failure has left the worried father in search of a kidney, funds to pay medical expenses and a way to remain a hero to the eldest of his four daughters.
“As a man, in biblical reference, the man is the head,” said Patton. “I am superman to my kids. Daddy is superman.”
Once an athletic eighth-grader crowned Miss Eisenhower at Eisenhower Junior High in New Orleans, Kyia is now in the second stage of juvenile kidney failure, an unexpected three-stage disease.
The 13-year-old now spends several days and several hours a week attached to dialysis machines at New Orleans Children’s Hospital, resulting in fatigue.
“When a person goes through dialysis, it makes their body prone to infections because it weakens the immune system,” said Patton. “She now has to be treated like a baby. I have to bathe her, put the cup under her when she uses the bathroom, and I have to wipe her just like a baby.”
The disease that engulfed the 4-foot-9-inch, 70-pound girl was abrupt, said Patton. He received a phone call from her mother, who was hysterical after she was notified that Kyia’s body had begun to swell and her blood pressure was so high that the average adult would have suffered a stroke.
Patton said Kyia’s body would swell so much that when he touched her hand it felt as if her knuckles were floating.
“The only thing that saved her was that she was a child,” said Patton. “She was admitted for nearly a week. It took them four or five days to finally get the blood pressure down.”
During juvenile nephronophthisis, patients become worse as time passes. Doctors have not yet given Kyia a certain timetable, but they have emphasized that by age 15 it becomes harder for patients to receive a kidney.
Suffering from his own migraines, sometimes needing shots to relieve his pain, Patton says that it is hard to see his child go through so much pain.
“She wants an answer, but I can’t help her,” said Patton, now expressing himself through his hands. “She asks me, ‘Daddy, what’s wrong with me?’ and I have no answer for her.”
Aware of the issues, Patton says that Kyia knows something is wrong, she just doesn’t know how serious it is and tries to keep her days as normal as possible.
The next step for the youngster is to be put on a donor’s list, while her loved ones attempt to cover the medical expenses that are currently over $100,000. Patton says that his insurance covers 80 percent of all medical cost, but that still leaves him in debt of nearly $30,000. He says the entire cost of a transplant and medical bills can reach almost $250,000.
The task of parenting a sick child is daunting, says Patton, but he understands that this is experience will help change the lives of others.
“It’s hard for me to get out of bed at times,” said Patton. “I’m tired, but I have three other daughters and an 18-year-old nephew who I’m raising. They need me.
“Everyone has a defining moment in their life that will change them. This is mine.”
With the emotional and medical issues facing Kyia Patton, the family has scheduled a fish fry to help with the cost of medical expenses. It will be held in the Arcadia City Hall parking lot from 10 a.m. to 1 p.m. Saturday.