Child celebrates one year with the gift of sight

On April 6, 2016, 14-month-old Joseph Carlson will be celebrating an important anniversary –one year ago, he was able to see for the very first time.

At three months old, Joseph received his first cornea transplant in his left eye. Before the surgery, Joseph was blind, only able to see bright lights.

“I knew something was wrong with Joe’s eyes right after he was born,” says his mother Andrea. “His eyes had a cloudy, chalk-like appearance.”

Days later, Andrea and her husband learned that Joseph had a disease called Peter’s Anomaly, a condition that causes corneas to be clouded at birth. Peter’s Anomaly is so rare it occurs in only 1-2 children per 100,000 births.

A pediatric ophthalmologist in Des Moines referred Joseph to the ophthalmology department at the University of Iowa Hospitals and Clinics. He was one-week old when he had his first appointment with Dr. Kenneth Goins and Dr. Scott Larson. Three months later, Joseph had a cornea transplant in his left eye and was able to see the world for the very first time, giving him the chance to lead the life of a normal child.

Joseph now enjoys the outdoors, walking, and exploring the world. “We call him our little professor, because he’s always looking at objects analytically, examining them closely. He loves cords and anything he can open and shut.” says Andrea. “I don’t look at Joe as a child with special needs. He might have some things that are different from other kids but he is who he is – he’s just Joe.”

Doctors cautioned that the graft might be rejected, so his family is ecstatic he made it this far. “It’s been a rough year,” says Andrea. Joseph has had multiple eye surgeries since his first cornea transplant. “There is nothing more gut wrenching than hearing him scream as they carry him off to the operating room,” says Andrea. Still, she finds peace of mind knowing he is receiving excellent care.

“We are so blessed that we only live two hours away from the University. It was hard making weekly trips during the winter time, but we are grateful we don’t have to fly across the country to receive the specialized care we need,” says Andrea.

Andrea quickly learned that there were not a lot of resources available on Peter’s Anomaly. Fortunately, she was able to find a small support group of other parents who have children with the disease. “It’s comforting talking to other moms who know what we’re going through,” says Andrea. “Seeing that other kids are up against the same thing gives us hope.”

Inspired by another mother in her support group, Andrea created a Facebook page called Joseph’s Journey. “I wanted to get awareness out there, so that other families of children living with rare diseases don’t feel so alone,” she said.

Several days before Joseph’s most recent eye surgery in February, Andrea put out a request to her Facebook followers, asking them to show their support by wearing blue. She was surprised and delighted by the responses she received. Iowa Lions Eye Bank, which has provided the corneas for each of Joseph’s surgeries, sent her a picture of staff members wearing blue in Joseph’s honor, along with a video offering their well wishes.

“My older children were floored that people we didn’t even know would do something so kind for us. They thought it was the coolest thing,” said Andrea. “‘See,’ I told them. ‘This thing is bigger than us.’”

Joseph is now 14 months old, and the reality is that he will have ongoing eye surgeries for the rest of his life. Each time he has a surgery, there is a risk that it will cause permanent damage to the structure of the eye.

“We just live in the moment with what we have,” says Andrea. “We try to give him as many experiences as possible, because we don’t know where we’ll be ten years down the road.”