Thriving in a new life after eye disease diagnosis

Jake’s optimism shines, and people of all ages gravitate to him.

Jake Morrison from Louisville, Ohio is an active 11-year-old with a fun personality and great golf swing. Even though he has a rare eye condition, he doesn’t let it stop him from learning, competing and enjoying life.

Early issues lead to a diagnosis

At age 2, Jake’s right eye would intermittently turn outward. His mom, Antoinette, mentioned it to Jake’s pediatrician and received a referral to see a specialist. “We thought it was a lazy eye,” she recalled.

Dr. William Lawhon, a pediatric ophthalmologist at The Vision Center at Akron Children’s, examined Jake and was concerned for a retinal disorder. A referral to a pediatric retinal specialist led to confirmation of the “juvenile X-linked retinoschisis” (JXR) diagnosis.

This inherited condition starts in childhood and affects one in 25,000 males in the United States. Characterized by splits that form in the layers of the retina, it results in blurry vision. “No one in our family has it, so the diagnosis really took us by surprise,” Antoinette said. “We were overwhelmed with emotion about how we were going to keep Jake safe.”

Upon Jake’s diagnosis at age 2, Antoinette said the family had to learn what their “new life” meant to them. Pictured are Jake with his parents, Antoinette and Bob, and sister, Ella.

Becoming advocates

A few months after Jake’s diagnosis, Antoinette got actively involved in the eye community. “We weren’t going to let Jake’s diagnosis define him. We wanted to rise above the diagnosis and learn to live with the condition,” she said. “These were the cards we’ve been dealt, and we needed to figure out what to do from here.”

Inspired by their son’s journey with JXR, Jake’s family has become actively involved in vision advocacy and research. For example, Antoinette joined the Cleveland chapter of the Foundation Fighting Blindness. Every year, a team of supporters called “Jake’s Eyevengers,” made up of Jake’s family and friends, joins the foundation’s fundraising walk. “I get choked up when I see how many people show up for Jake,” she said. “This is our way to create awareness and advocacy for his condition. We want them to know about JXR and the importance of donating money for vision research.”

Antoinette and Jake with Dr. Faruk Örge, director of the Akron Children’s Division of Pediatric Ophthalmology. She served on the Cleveland Eye Bank Foundation board for three years. Before closing in 2025, the foundation donated to various hospitals. The donation to Akron Children’s will fund vision research, and the dilation room has been named in honor of the gift.

Support from school

Jake has had eight surgeries on his right eye, and only some side vision remains. Akron Children’s monitors his vision, makes sure he has the right glasses and helps with his individualized education plan (IEP) at school. His retinal specialist performed the surgeries and continues to treat his JXR.

Jake’s left eye is fine, but that could change. “Because the course of the disease is so variable,” Antoinette said, “we don’t know if his left eye will be affected.”

She works closely with Jake’s medical team and teachers to make sure his IEP covers all the bases. “Every year, I meet with his teachers to discuss what he can and can’t do,” she said. “We’re very blessed with a good school district.”

Preparing for the future

Jake cannot play contact sports because a hit to the head could detach his retina and cause blindness. “He navigates life with a lot of restrictions, but it’s always important to let him be a kid,” Antoinette said. “He took up golf at age 5, and he loves it. Louisville has a golf club for kids in grades 5-8, and it’s his first chance to be part of a sports team. Also, he’s active with the Junior PGA Tour and has participated in the Northeast Ohio Junior Tour Powered by Under Armour.”

Unsure about long-term vision in his left eye, Jake has been learning Braille for three years. A teacher for visually impaired students works with him three days a week, as part of his IEP. “He picked up the entire Braille alphabet in the first year,” Antoinette said. “He participated in the freshman division of a Braille challenge when he was only 10, and he came in first place. He’s very determined when he puts his mind to something.”

Jake hits the links as part of the 2026 Firestone Charity Classic outing, a fundraiser with proceeds benefiting Akron Children’s.

Hope on the horizon

The Foundation Fighting Blindness is funding a promising clinical trial called the Lighthouse Study. “If it goes through the final phases and gets FDA approval, it could provide a JXR cure as early as 2028,” Antoinette said. “There’s a lot of scar tissue built up in Jake’s right eye from the surgeries, so he likely won’t see out of it if there’s a cure. But we won’t have to worry about him losing sight in his left eye.”

Dr. Lawhon calls it “heartwarming” to see how well Jake has handled his eye condition. “Dealing with a progressive disease with limited treatment options can weigh on kids,” he said. “But Jake has continued to live life, playing golf and being an eternal optimist. Antoinette is a very strong person – and they’ve turned Jake’s battle into something positive that will hopefully help many kids down the road.”