Antonio “A.J.” Jahari Knowles has been through a lot in his short life, more than anyone, especially a child, should have to endure. A.J. was diagnosed with Arthogryposis Multiplex Congenita shortly after birth, a congenital condition that impacts nearly every joint in the body, causing lack of muscle development and growth. Doctors said A.J. wouldn’t live to see his first birthday, but he has proven them all wrong.
Now 11 years old, A.J. uses a wheelchair and has undergone 41 surgeries with the help of the Shriners organization, which operates 20 children’s hospitals in the United States, one in Canada, and one in Mexico. Shriners has a five-star rating with Charity Navigator.
“Shriner’s is a good organization,” Willie Mae said. “I would recommend them to anyone. He was three years old when they started taking him to South Carolina. He was so little that they used to tote him in an arm cuff. They have done remarkable work.”
One surgery involved removing muscle from A.J.’s back to replace muscle in his disabled right arm. Since that surgery, he has regained movement in his hand. He’s also had four hip surgeries and surgeries to correct his curled feet, among others. A.J. has a feeding tube since he cannot chew or swallow and also suffers from chronic pain, asthma, and sleep apnea. Despite all of his ailments, A.J. is a typical boy and doesn’t let anything get in his way.
“He moves around,” his mother Willie Mae said. “He can get up the stairs. He can scoot down the stairs. He’s determined. When he’s at home, he’s not in a wheelchair. He’s able to do pretty much everything a normal child can do. He amazes me.”
“My mom calls me the Six-Million Dollar Man,” A.J. said. “Do you know who that is? He’s bionic.”
A.J. will be starting sixth grade at Phenix City Intermediate School in the fall and has excellent grades. In his free time, A.J. enjoys playing video games like Call of Duty, watching the cartoon Sponge Bob, and reading his Bible. He wants to be a lawyer when he grows up.
“I watch a lot of TV with lawyers on it and that’s what I want to be,” A.J. said.
“Everything he can’t play, he keeps messing with it and he masters it,” Willie Mae added. “He doesn’t give up. He keeps trying until he gets it.”
A single mother, Willie Mae quit her job as staff at Florence Marina State Park in Omaha, Ga. to be A.J.’s fulltime caregiver. His big sister Marissa Dawson, 28, also helps out and A.J. inspired her to become a medical assistant.
A.J. will travel to the Shriners Hospital for Children in Greenville, S.C. on Sept. 4 for a pre-op appointment and then will return there on Sept. 24 for surgery number 42 to do more work on correcting the shape of his feet.
Willie Mae said that the Shriner’s cover all expenses for the surgeries and travel.
“If I didn’t have them, I don’t know where I would have been,” she said. “If it hadn’t been for Mr. Jeff Johnson and the Shriners…they made it so easy for me. If I can’t do it, they’ll do it. They are so helpful.”
Jeff Johnson is the public relations chair for the Phenix City Shrine Club and serves on the Board of Governors at the Shriners Hospital for Children in Greenville, S.C. The Shriners opened its first hospital in 1922 and have helped more than 1.3 million children. Jeff is a second generation Shriner, following in the footsteps of his father, Amos Johnson, now deceased. LaDon McAllister, Jeff’s son, is also now a Shriner. So, three generations of Jeff’s family have provided transportation for A.J. and his mom.
“He’s real special to us,” Jeff said. “Every child is special, but he is kind of a unique case to us.”
The Shriners Hospitals for Children have four medical areas in which they specialize: orthopedics, spinal cord injuries, burns, and cleft lip/palate. Jeff said this year the Shriners expect to spend approximately one billion dollars to operate all 22 hospitals and they have nine billion in trust. A
“Every Shrine fundraising you see around the country is going to, in some way, benefit our hospitals,” Jeff said. “All the Shriners across the world, as a fraternity, our purpose is to have a good time, have fun, and come together as friends. As a philanthropy, our purpose is to help children. We’re always looking for new members who want to have a good time and make a difference in the world through helping change a child’s life.”
Learn more about Shriner membership at Beashrinernow.com.