Quitting is not an option

A New Jersey child undergoes pioneering vision surgery at the Gavin Herbert Eye Institute

October 12, 2015
"Quitting is Not An Option" - Thomas Walkup

The only item 8-year-old Thomas Walkup insisted on packing for his trip to California in August was his baseball glove. The Millville, N.J., youth knew he would attend an Angels baseball game and planned to snag a foul ball.

His mother and stepfather, Susan and JT Banks, Jr., carried something weightier: a mix of anxiety, hope and gratitude. After several difficult years, Thomas was scheduled to undergo a rare eye surgery at the UC Irvine Health Gavin Herbert Eye Institute to correct a vision problem that left him struggling to see anything more than blurry shapes.

On Aug. 13, Thomas underwent the two-hour surgery to correct congenital nystagmus, a condition sometimes called “shaky eye syndrome,” in which the muscles that control eye movements pulse continually, causing rapid and repetitive eye movements. The eyes move involuntarily either side to side, up and down or in circles, making it impossible to gaze at any object steadily and leaving the child functionally blind. For a child, the condition typically has a dramatic impact on educational and social development. His mother was told Thomas would not be able to play sports or drive a car. He was destined to struggle in school.

Banks passed on a surgery that doctors said would improve the cosmetic look of Thomas’ eyes but would not help his vision. Earlier this year, she hit another roadblock when a New Jersey state commission denied Thomas services for the blind. His vision was deemed not severe enough to qualify for assistance. The school district, meanwhile, wanted to classify the bright second grader, who saw objects more clearly by peering out of the corner of his eyes, as learning disabled.

Susan BanksGavin Herbert Eye Institute and learned of an experimental surgical procedure offered by Dr. Robert W. Lingua, a UC Irvine Health pediatric ophthalmologist, to restore vision in children with congenital nystagmus. Lingua is the only surgeon in the world to perform the operation, which involves removing part of the muscle that controls eye movement.

“In our profession, there is an expectation that nystagmus cannot be controlled with surgery,” Lingua says. Traditional nystagmus surgery involves detaching, moving, then reattaching the eye muscles to adjust the position of the eyes. But the surgery often does little good because the brain continues to send impulses to those muscles, causing the shaking.

In 2002, however, Dr. Robert Sinskey of Los Angeles devised a different approach to improve the outcome of surgery by removing part of the eye muscle. Removing part of the muscle tends to interrupt the impulses from the brain to the eye muscles, resolving the involuntary shaking. Few ophthalmologists showed interest in developing the procedure before Lingua became intrigued and asked Sinskey about his research.

“It was revolutionary to think that you could remove the front portion of the muscle and not do more harm than good,” Lingua says. But after performing a few cases in early 2013, Lingua realized he could obtain good results. He’s preparing a paper about his first 40 cases and is further enhancing the procedure as part of a clinical trial. While the initial surgery typically resolves the shaking, some patients require a second surgery to correct misalignment of the eyes.

“We’re trying to figure out how much muscle is the precise amount to remove to stop the nystagmus but not risk misalignment,” he says. “The perfect result would be to stop the shaking and straighten the eyes in every patient. That’s our dream, and that’s what we’re aiming to do.

”After being told last year that Thomas would have to stop playing T-ball and wrestling, his family is ecstatic at his opportunity for better vision and a normal appearance. While in Orange County, Thomas got to visit Disneyland and meet his hometown hero, Angels center fielder and All-Star MVP Mike Trout. The family’s trip was supported by about $10,000 in donations from the Millville community.

Thomas has endured much in his short life, Banks notes. He had a tumor removed from his skull in 2014, due to a rare disorder called Langerhans cell histiocytosis. After the surgery he suffered a heart arrhythmia, requiring another surgery. As he entered second grade last fall, questions and teasing from classmates about his eyes began.

But last year, when a doctor told Thomas he needed to stop wrestling due to the nystagmus, he responded: “Quitting is not an option.”

“Thomas is a good-hearted kid, a determined kid,” Banks says. “I had always dreaded telling him that he would never drive a car. The first words out of his mouth when he first learned to speak were ‘57 Chevy.’”

Now, thanks to Lingua and his team at the Gavin Herbert Eye Institute, the town of Millville and many other supporters, Thomas Walkup is in the driver’s seat.

For more information visit ucirvinehealth.org/thomas.

— UC Irvine Health Marketing & Communications
Featured in UC Irvine Health Live Well Magazine Fall 2015

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