PORTLAND, OR (CBS Local) — An Oregon boy is seeing for the first time thanks to a new gene therapy treatment.
Caspian Soto was just like any other 4 year old, except that he had been born with a rare genetic mutation that causes Leber’s congenital amaurosis.
The mutation affected the gene that produces the proteins needed for a fully functioning retina and left his vision dark and blurry.
“He was just staring at overhead lights all of the time,” said Krista Soto, Caspian’s mother, told KPTV. “He wasn’t making eye contact, he wasn’t tracking toys that we put in front of his face and waved to play with him.”
All that changed when his parents heard about a new gene therapy treatment called Luxturna.
Dr. Andreas Lauer performed the treatment on Soto’s right eye at the OHSU Casey Eye Institute on September 17, injecting a modified virus underneath the retina to correct the mutation. She did the same on his left eye a week later.
“After a lot of jumping through hoops,” Krista Soto said her and her husband Zack Soto’s insurance covered the $850,000 treatment.
Soto came out of surgery in a whole new world. His parents say it only took two weeks for him to start seeing spaces in a new way.
“I keep having to pinch myself and be like, is this real… do I not have to worry about this anymore?” said Krista Soto.
Doctors say they expect Soto’s vision to continue to improve.
Soto is the second patient, and the youngest, to receive the treatment in Oregon.
Currently, just nine U.S. institutions offer Luxturna, according to the Portland Business Journal.