Life Through Mav’s Eyes
Beacon Stories
Maverick, a determined and adventurous 10-year-old, was diagnosed with X-linked retinoschisis (XLRS) at age six, which led his family to find support and resources through the Foundation Fighting Blindness. Since his diagnosis, Mav continues to pursue his passions in sports and outdoor activities, inspiring his family with his resilience and positive attitude.
Mav and his mom Jenna outside.
Maverick (Mav) Raulerson is a sports and outdoor-loving 10-year-old boy who will tackle any challenge without fear. His unwavering determination makes his mother, Jenna, so proud, and keeps his entire family moving forward in their journey with X-linked retinoschisis (XLRS).
Jenna vividly remembers the day that changed their lives. During a routine wellness check when Mav was six years old, he couldn’t see the eye chart, prompting a visit to an optometrist. And after a gamut of tests revealed that Mav’s vision was far worse than Jenna had imagined, and the optometrist was baffled, they were sent to a retina specialist.
“It was a day I’ll never forget,” Jenna recalls. “It was really a catalyst to our whole journey.”
The retina specialist diagnosed Mav with XLRS, a disease they knew nothing about, so Jenna immediately searched for answers. The worldwide retinoschisis group on Facebook led her to Lisa Pleasants, the Jacksonville chapter resource chair for the Foundation Fighting Blindness. Within weeks, Jenna attended her first Foundation Fighting Blindness chapter meeting. Dr. Sandeep Grover, the Jacksonville chapter education chair, welcomed her, and the Foundation’s resources became their lifeline.
“The stars aligned in so many ways for us at a time that was really scary and unknown,” Jenna recalls. “Getting connected with the Foundation Fighting Blindness so quickly was the best thing that could have happened to us. There would have been so many question marks in my mind, but the Foundation and all the resources that come with it put my mind at ease.”
Mav standing outside next to the Bascom Palmer Eye Institute sign.
Genetic testing revealed more than just Mav’s diagnosis. They learned that Jenna’s father, at 70 years old, carried the same genetic mutation and that Mav’s younger brother, Gunner, did not. Jenna grappled with guilt, fearing that Mav may feel different than Gunner. But she held onto the belief that everything happens for a reason.
Mav’s spirited personality is nonstop. He continues to play baseball, flag football, golf, and fish, and he is a devoted fan of his favorite sports teams. When Mav gets older, he strives to be a pro golfer or marine biologist.
“Mav is stubborn in the sense that he’s going to do things the way he wants to do things,” says Jenna. “We try hard not to hold him back, even though, as a parent, it can be hard to watch your child struggle and know why. But to Mav, his vision loss isn’t a reason he can’t do things, and he has never let it hold him back.”
With his infectious confidence, Mav embraces his eye doctor’s appointments as adventures. “I get cool glasses after the appointments,” says Mav. Jenna ensures he hears it all—the good, the bad, and the ugly. Armed with knowledge, Mav still chooses to embrace his journey without fear.
Mav and his little brother Gunner outside at a golf course.
“I’ve never sent him out of an appointment or not let him hear what the doctors have to say,” says Jenna. “I think it’s so important for him to hear it all for himself and to understand his disease so that he can become his own advocate. The more information he’s armed with, the better prepared he’ll be on his own one day, and I think that gives him the confidence that he’s in control of his future.”
Once a year, Mav sees a pediatric retina specialist at Bascom Palmer Eye Institute, where they just learned about participating in a clinical trial for XLRS for which they’re recruiting children for soon.
“Learning about all the potential treatments, like gene therapy, are so surreal to think about,” says Jenna. “It gives us hope and would be so life-changing for all of us.”
Jenna is doing her part to help accelerate research for Mav and others with XLRS. For two years, they hosted a golf tournament fundraiser for the Foundation called ‘See Like Mav,’ which were both huge successes. Mav’s golf coach attends as well as family and friends in their community.
“Mav’s diagnosis has given us a purpose,” says Jenna. “It’s easy to feel sorry for yourself, but when it’s your child, you don’t have a moment to be sad, you just have to figure out what’s next. Being a part of this community, and meeting others with blinding diseases like Mav and seeing all they’re able to accomplish is so inspiring and really encouraging.”
This Beacon Story is sponsored by Johnson & Johnson.
