All the doctor had to do was look in 4-day-old Jenna’s eyes to know that something wasn’t right. Instead of green or blue or brown, her eyes were simply dark.
That same day, Tom Cox and his wife, Kelli, received the diagnosis for their child: WAGR syndrome, an extremely rare genetic disease affecting fewer than 500 people worldwide. One of WAGR’s symptoms, they discovered, is aniridia, a condition that leaves those affected without irises, which causes varying degrees of blindness. Jenna was missing rises in both eyes and within the next two years developed other symptoms of WAGR, including kidney cancer and various developmental delays. Before Jenna turned 2, she was back at the hospital for her first round of chemotherapy and later had one of her kidneys removed.
“For me as a father and a believer, it’s presented real challenges, even with strong faith,” said Tom, who was a Reformed Theological Seminary student in Orlando when Jenna was first diagnosed. “I remember waking up screaming, ‘God, you’ve got the wrong man!’ You just kind of figure life will go a certain way, and it doesn’t. It took me several years to change my view from ‘Why me?’ to ‘Who better than me?’”
As the years have passed, the Coxes have enjoyed the friendship and support of the congregations of the three PCA churches where Tom has served as pastor, currently Malvern Hills PCA in Asheville, North Carolina. They have had numerous opportunities to share the Gospel with those they have met in hospitals, schools, and WAGR support groups — anywhere Jenna’s challenges have taken them.
Through it all, Jenna has grown into a young woman, now 17, who continues to amaze those around her.
“She doesn’t let anything stop her,” Tom admits.
A high school junior, Jenna has earned a black belt in karate and plays percussion in the pit of her school’s marching band. She struggles with math and reading, but she managed to make the honor roll and has dreams of attending college to become an ultrasound technician. She says her faith in Jesus has given her more patience to weather the leg braces, the inability to see more than four feet in front of her, and the never-ending surgeries. She cites 2 Timothy 1:7 as her favorite Scripture: “For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.”