Conquering Nystagmus

Imagine growing up and not being able to clearly see the mountains outside your bedroom window, the teacher at the head of the class, or your favorite book or video game. You can no longer play soccer or baseball, and when you get older, you won't be able to qualify for a driver's license.

Each year, thousands of children are born with or develop a condition called congenital nystagmus. Also known as "dancing eyes" or "shaking eyes," nystagmus refers to involuntary eye movements — up and down or side to side — that often results in severely limited or reduced vision.

Parents who seek treatment for their child's condition have few options. The child can live with it and adapt to deteriorating vision, or undergo existing treatments that may surgically reduce the shaking but do not improve their vision.

In recent years, UC Irvine Health Gavin Herbert Eye Institute has developed an innovative experimental procedure that takes a radical approach to treating nystagmus.

Over the next several months, UC Irvine Health will highlight 8-year-old Thomas Walkup, his mother Susan Banks, and his journey to improved vision.

Along the way, we will introduce pediatric ophthalmologist Dr. Robert Lingua, recount the experiences of other nystagmus patients and describe Lingua's innovative nystagmus surgery.

The procedure has been controversial among ophthalmologists but has so far helped dozens of children regain their vision.

Meet Thomas: “I’m going to California!”                                                           

Eight-year-old Thomas Walkup of Millville, New Jersey is coming to Orange County to seek a cure for his congenital nystagmus, a condition that threatens his vision and his future. See more

Meet Dr. Lingua: “This is why I got into medicine”               

Dr. Robert Lingua of the UC Irvine Health Gavin Herbert Eye Institute describes the innovative eye surgery for congenital nystagmus that Susan Banks hopes will improve her son’s vision. See more

Meet Grace: “My eyes used to shake”

When Thomas has surgery to correct his congenital nystagmus, he will follow the same path Grace Nassar took. Now eight years old, Grace was among Dr. Lingua’s first congenital nystagmus patients.  Two years after her surgery, Grace is thriving. Her vision is improving and she has some advice for Thomas. See more

Growing up with congenital nystagmus

Erick Ojeda, a Millville, New Jersey neighbor, describes growing up with nystagmus and his hopes for Thomas’s future. Though he can’t drive, Erick has his own business and relies on technology to help bridge the vision gap.
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Neighbors send best wishes to Thomas before nystagmus surgery

Hometown supporters from Millville, New Jersey wish Thomas luck on his journey to better vision. The eight-year old came to California to undergo an innovative surgery at the UC Irvine Health Gavin Herbert Eye Institute correct his congenital nystagmus. See more

Thomas meets his baseball hero a week after nystagmus surgery

With Dr. Lingua’s innovative nystagmus surgery completed and Thomas on the road to recovery, it was time to get down to business: Meeting Thomas’s hometown hero, LA Angels centerfielder Mike Trout. See more 

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