Family Faces the Challenges of Genetic Vision Loss with a Positive Mindset
When Sabrina Brantley and her husband, Jeremy, decided to have children, they knew there was a chance they could be born with retinitis pigmentosa. Sabrina’s father had the genetic condition—which causes night blindness and progressive vision loss, starting with the peripheral vision—which meant she might be a carrier. But instead of having genetic testing done first, the Brantleys decided to start their family and face whatever came their way.
This can-do attitude is proving to be very valuable now that they know that both of their sons—Jeremy, who is ten, and Chase, who is six—have retinitis pigmentosa.
“They can’t see in the dark and have a hard time with dimly lit situations,” Sabrina said. “We’re trying to go out more at night and get them used to doing things but even situations like curbs in the parking lot can be tricky.”
The boys’ peripheral vision limitations are an issue even when there’s light. Both boys get some correction with glasses, but because the progression tends to follow that of the person it’s inherited from, it’s likely their vision will decline more, as their grandfather’s did. His vision got markedly worse in his late teens, and he eventually became legally blind.
Accepting a Child’s Blindness
The Brantleys have accepted the reality of what may happen to their sons’ vision and are preparing their boys for the same.
“I’m not sure Chase quite understands it all yet, and it’s taken Jeremy a little bit of time to adjust to the idea,” Sabrina said. “But Jeremy sometimes asks what it will be like when he can’t see, and he wants to start learning braille.”
Because the boys already have visual limitations, the Brantleys do whatever they can to accommodate them and keep them safe. Sometimes, it’s as simple as not leaving a laundry basket where the boys could trip over it. Both boys have nightlights in their rooms, and their parents urge them to carry flashlights.
“Chase has been saying he’s afraid of the dark, which is one of my biggest fears because it might be dark for him without being able to see,” Sabrina said. “So I’m really working with him on not being afraid.”
Solutions and Adaptations for Children with Visual Impairments
In addition to establishing good habits—like turning their heads to watch for balls being thrown during sports at school, for example—the Brantleys have come up with some clever, yet simple, solutions.
One was to install a motion detector light on their home that’s triggered the moment the boys walk out the front door. The light turns on whenever it’s needed so the boys can navigate the front steps safely, but they don’t have to leave the porch light on around the clock.
Another solution came in the form of a Christmas gift: an Amazon Echo Dot. The lights in each boy’s room are connected to the device, which is programmed to respond to their voice commands so that they can turn the lights on and off whenever they need to.
“It’s only $50 for the Echo Dot, and the light switches are maybe $20 each,” Sabrina said. “And it’s worth it when you realize how much they really need it.”
Taking Advantage of Every Resource
The Brantleys take advantage of every resource available to them near their home in Grand Prairie, Texas. The boys are mainstreamed at their public school—Jeremy is in the school’s gifted and talented program, and Chase tested into the program in kindergarten—where they work with a teacher of students with visual impairments and an orientation and mobility (O&M) instructor.
The O&M teacher also helps the boys practice certain situations, like navigating public transportation, and has taught the Brantleys to be sighted guides.
“Jeremy knows exactly what to do if he can’t see or if we’re in a place where the lights go off or something,” Sabrina said. “He automatically gets me to grab his arm, and we’ll walk, so he’s done very well with that.”
Although the Brantleys are resourceful on their own, Sabrina says she doesn’t know what they would have done without the support of the staff at school and other area services. She’s particularly grateful for the guidance they’ve received from Neva Fairchild, a National Independent Living & Employment Specialist for the American Foundation for the Blind (AFB) Center on Vision Loss in Dallas, TX.
“Neva has been great about talking to Jeremy and playing games with him,” Sabrina said. “She’s blind, and she tells us how she got to the point where she is. She had to learn these things when she was older, and if we can get these things as they’re young, it’s going to be so much better for them as they grow up through the process.”
The Brantleys have visited Esther’s Place, a fully furnished model home at the AFB Center on Vision Loss that’s fitted with simple adaptations and products that can make daily life more manageable for people with vision loss. Sabrina describes it as “an amazing place” and says Jeremy agrees.
“He kept saying, ‘Oh look! This is something I’ll need when my eyesight goes away,’ and we’re looking at all the things we’d possibly need,” Sabrina said. “It’s going to be a great resource for us when the time comes for them to try to be independent. I’m so grateful it’s there.”
Interacting with Other Families
Sabrina takes every opportunity to interact with other families in similar situations.
“We do a lot of fundraising, like the Dallas VisionWalk for the Foundation Fighting Blindness,” Sabrina said. “I meet so many people, and it’s good to be part of that community and know you’re not the only one.”
They’ve also taken advantage of the proximity of the Retina Foundation of the Southwest. The nonprofit has provided all of the testing the boys have needed, including genetic testing they decided to do as part of the boys’ diagnoses.
“Little Jeremy and I are going to be part of a clinical trial to investigate the gene involved in this condition,” Sabrina said. “We could help find a cure, which would be just phenomenal.”
In the meantime, the Brantleys are facing life with two boys with visual impairments with a positive attitude—about both their present and their future—supported by people like Neva.
“It’s been great for the kids to see that people can be successful even though they don’t have their eyesight or have bad eyesight,” Sabrina said. “I keep it in their heads that if they’re smart and get good grades, they can do whatever they want, and we’re not going to let anything limit that.”