For Cleveland couple Parker and Julie Sovey, the birth of their daughter McKinley came with an unexpected twist: she was all but blind and only able to see subtle lights and shadows.
It was a condition that would have forced both McKinley and her parents to adapt their lives in extraordinary ways just to get by and hope to live as normal and good a life as possible. Yet, it didn’t end up coming to that, thankfully.
Thanks to a breakthrough in medicine—in eye surgery in particular—their precious daughter got a new lease on life, and a new opportunity to see the world.
It took 3 sedations and, appointments with 2 different pediatric opthalmologists, a retina specialist, neurosurgery,…
Although she seemed perfectly healthy when she was born in 2015, the Soveys quickly realized that baby McKinley had something wrong with her eyes. Within a few weeks of bringing her home from the hospital, the Soveys noticed that McKinley wasn’t seeing things correctly; she would shake her head whenever an object was placed in front of her to see, and she couldn’t track well or make eye contact.
Fearing the worst, the worried parents brought her in for vision testing. She was declared legally blind before she could even walk, and the family soon found themselves immersed in countless hours of therapy for everything from using a cane to orienting their daughter in a room.
Yet, in 2017 they were given a beacon of hope.
If there's a sunny spot, she will find it.
First, genetic testing determined that McKinley’s severe visual impairments were due to an incredibly rare genetic condition called Leber’s congenital amaurosis (LCA)—the main cause of childhood blindness. One of just 2,000 people in the United States with the condition, McKinley’s problem was with her retinas, the part of the eye that processes light and helps form images to pass to the brain.
Then, the family received the news that a new gene therapy had been approved by the FDA to help combat McKinley’s genetic condition—and with the treatment, it was possible their daughter would be able to see one day.
Working hard at vision therapy this morning.
According to the University of Iowa Stead Family Children’s Hospital, “The new therapy involves injecting copies of a normal version of the RPE65 gene—the gene responsible for producing a protein that makes light receptors work—into the patient’s eye. In the final stages of the 2013 clinical trial, patients were directed by arrows through a mobility course in seven different light levels, with the course changing with each change in lighting. The lowest level of light was that of a moonless summer night, and the brightest was that of a well-lit office.”
A small accomplishment for most but it took us a year to get to this point! I could never sit McKinley in the front of…
Finally, in 2018, the Sovey family was able to travel to Iowa for the treatment. McKinley underwent surgery on her first eye on November 8th, then on her second a week later. Soon, her parents noticed a miracle; after years of having to worry about their daughter seeing more than just vague shadows, she was able to see her own reflection and get around by sight!
“She walked into the kitchen, pulled a chair out, stood up on the chair, and [was] 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,” explained dad Parker.
I can't wait to see what the new year will bring for McKinley! Hopefully answers!! Have a great New Years everyone!
Then, mom Julie recalled that she realized one day her daughter was actually able to see her. “There was that moment when she did look at me for the first time,” she said.
“I was like, ‘I think this is working.’ I can’t even really explain it.”
There are still developmental delays to overcome, but the world has suddenly become incredibly bright for young McKinley!
McKinley was so excited to get her feel better friend today!!
Back to Iowa we go, Eye #2 at 8am tomorrow! Keep those thoughts and prayers coming for a successful surgery ❤️