McKinley Sovey is the youngest person to undergo this type of gene therapy. Her parents Parker and Julie Sovey have been watching her progress.
“There was that moment when she did look at me for the first time,” said Julie. “I was like I think this is working. I can’t even really explain it. She’s 3 years old and she looks at mom for the first time. It was a really, really cool moment and it was the moment I was waiting for.”
McKinley was born practically blind. The most she could see was the contrast of light. When she was a year and a half, doctors discovered she inherited a retinal disease.
Dr. Stephen Russell works in the Department of Ophthalmology and Visual Sciences at the University of Iowa Hospital. He performed both of McKinley’s eye surgeries with the gene therapy earlier this month.
“Complicated drug because it has multiple parts to the drug and complicated surgery because to make sure we delivered the drug to the appropriate tissues,” said Russell.
Russell said he is basically forcing DNA into the right cell.
“We had to do a surgery just to put the solution in the appropriate spot, which is in the area underneath the retina,” he said.
“At that point, it’s just fingers crossed that this gene ends up in the spot that it’s supposed to,” said Julie.
The Soveys knew there were risks and potential complications.
“It’s terrifying,” said Russell.
They were hoping the therapy would at least help McKinley maintain the little vision she had. After the first eye surgery, mom and dad didn’t notice a difference. But it was shortly after the second surgery they knew it worked. Parker said she was moving with a purpose.
“She walked into the kitchen, pulled a chair out, stood up on the chair and actively feeling like the toaster and the coffee maker like she knew those were there and she wanted to get up and be able to feel them,” he said.
McKinley’s depth perception is also changing.
“Being able to see things further away has been really neat and it’s also been kind of scary because I feel like I’m having to re-childproof the house for a 3-year-old,” said Julie.
“She use to feel around for whatever it was she was eating,” Parker said. “Then she’d put her hands in it to see what it was and then she’d put the spoon in it, and then usually it was dumped by the time it got to her face.”
McKinley will still likely be visually impaired, but her parents said any progress is a bonus.
“She may no longer need to be a braille reader,” Julie said. “I don’t know if she’ll need to use a cane to navigate.”
They said their daughter is becoming more confident and her personality is even changing.
“This is kind of part of medical history,” said Julie.
McKinley has some checkups scheduled, but doctors hope she won’t need another surgery.
