Walking by Faith When Sight Fades A Mother’s Fight Against Retinitis Pigmentosa

Walking by Faith When Sight Fades

A Mother’s Fight Against Retinitis Pigmentosa

Ellen Keaton

The Ashland Beacon

For a mother, welcoming a baby is a joyful milestone. While counting tiny fingers and toes is often one of the first things she does, what remains etched in her memory is gazing into her baby's eyes for the very first time. Whether those eyes are blue, brown, or green, that initial moment is never forgotten.

There are many times in the coming years when a mother will wipe tears from those eyes, whether from a skinned knee, a lost pet, or a broken toy. As parents, we do everything possible to protect our children, so they grow up healthy and happy. Now imagine, for a moment, discovering that what you had long dismissed as simple clumsiness or silliness was actually the first sign of an incurable disease in those precious eyes.

This was the exact situation Jessica Adkins found herself facing in the fall of 2025. Through a series of events that Jessica says was just a “God thing,” she learned her children had a genetic disease with no cure. Jessica had always homeschooled her children and been involved in homeschool groups. As the children grew older, there were fewer children for her oldest daughter, Luca, to interact with. She made the decision to search for a private school that used a Bible-based curriculum. While on a tour of Rose Hill Christian School, Jessica learned there was a teaching position open.

Jessica said, “After praying about it, I applied for the position and was hired, so the decision was made that the children and I would begin school at Rose Hill. I was told that Luca and Buddy would need an eye exam. No big deal…right? Buddy was finished with his, but when the doctor examined Luca, he was very quiet.” She continued, “He looked at me and asked if I had ever heard the term Retinitis Pigmentosa. I had not, and I was not prepared for the explanation he gave me that day.”

The doctor explained to Jessica that RP occurs when the rods and cones in the eye begin to deteriorate and can eventually lead to complete vision loss. With her mind racing, she realized that Luca was in the room, and thankfully the doctor understood that this was not a conversation a young lady needed to hear.

“I really couldn’t grasp what I had just been told, and when I got in the car, I did the thing you should never do…I Googled! My world was rocked. I didn’t tell my mom…I couldn’t grasp what I had been told…how was I going to tell anyone else? I immediately scheduled an appointment with a retina specialist.”

Jessica recounted that the first specialist they saw was not very positive or helpful, but he did confirm the diagnosis. This was when she shared the news with her parents. “I actually told my dad so he could tell my mom because I just couldn’t do it. I also told him to be sure she understood that she had to be very strong in this because I couldn’t carry it all. It was still so hard for me to accept.”

There are no major symptoms of the disease, and Jessica felt that was the reason it was such a shock to hear. “There were no immediate signs that anything was wrong. We just noticed they would run into things at times, and they had trouble with dim lights—things like going to the movies. They could see the movie fine but had to be helped with seating or leaving the theater if the lights were dim. It is a genetic disorder, and in reality, it was all they had ever known. They had just dealt with it.”

Because it is a genetic disorder, every patient’s experience with RP is different. The first thing typically affected is night vision, and both children have experienced this. Jessica chuckled and explained she was like their “guide dog” for night events such as parades or climbing steps. She said that depth perception is also compromised. Riding a bike was difficult for Luca, as was going down steps. Buddy chimed in, “I have the steps memorized,” which is how he navigates.

Buddy shoots on the archery team at school. “He does fine seeing straight ahead and shooting the arrow but has difficulty with depth perception when he reaches down to the quiver for an arrow and often misses picking it up on the first try.”

Luca is a quiet young lady. When asked what some things were that she liked to do, she said, “I like cats, playing piano, singing, drawing, and crocheting.” Buddy, on the other hand, is more of an outdoorsman. He replied, “I really like hunting, fishing, and archery.”

Luca and Buddy are in the 10–12 age range when most children are diagnosed with the disease. Although RP is rare—affecting only 1 in every 4,000–5,000 people—both of the Adkins children have the disease.

Between the ages of 15 and 30 is when most changes begin to take place. The early days of shock and confusion have now passed, and Jessica has become, in her words, “an RP expert” and their number one advocate. She said, “The first thing you do when you have something like this is contact the Foundation for the Blind to get genetic testing. They have to know exactly what the coding is because there are specific gene and cell therapies in the works, but nothing is FDA-cleared for younger patients at this time. There are also many clinical trials coming, and it all depends on the genetic mutation.”

Although there is no cure or way to reverse the damage, supplements, proper diet, low stress levels, eating well, and frequent rest can help.

It is obvious that Jessica has spent countless hours researching ways to help Luca and Buddy have the best life possible. “This was really hard for me to do, but I recently had to order their little white canes. It’s hard for me to admit that, but here’s the thing: we’ll do whatever we can. They don’t need them during the day, but we’re learning how to use them at night.” She also mentioned that they are beginning to learn braille and will soon start Orientation and Mobility training.

“Now that I’ve gotten over that initial…oh my gosh…now it’s, ‘Okay, what can we do to give them freedom?’ We have to be smart and prayerfully proactive. We are going to be prayerful but also give them the tools they need to equip them if they do lose their vision.

“I refuse to accept that there is nothing that can be done because I feel like God is going to do something. We have to have that optimistic hope. If I don’t have that hope, then I’m saying that I don’t believe God can do what He can do. This is a testimony for them, and I’m OK with whatever God has planned for their lives.”