Health
Ohio boy, 8, prepares for blindness: ‘It’s heartbreaking,’ his mom says
Grayson Naff, 8, is preparing for life without vision.
The Ohio second-grader was diagnosed last year with Batten disease, a rare genetic disorder that causes vision loss, seizures, cognitive decline, impaired mobility and, ultimately, death.
As the disease progresses and his vision further declines, the child — with the support of his mother, Emily Blackburn, and a host of educators and experts — has started the necessary training to navigate the world without eyesight.
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Naff’s current vision is around 20/200-20/300, which is considered legally blind.
He sees best about 5 to 10 inches in front of him, Blackburn said.
Grayson Naff, 8, pictured with mom Emily Blackburn at left, was diagnosed last year with Batten disease, a rare genetic disorder that causes vision loss, seizures, cognitive decline, impaired mobility and, ultimately, death. (Emily Blackburn)
Recently, the boy began “white cane training.”
A white cane is a critical mobility tool for the blind or visually impaired. It scrapes along the ground as the person walks, allowing the individual to gather important information about the surroundings.
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“White cane training is important for certain individuals with vision loss to increase their independence while traveling throughout their environment,” Rhianna Witt, an orientation and mobility specialist with Montgomery County Educational Service Center (MCESC) in Dayton, Ohio, told Fox News Digital.
Witt has been working with Naff on his white cane training.
“The white cane allows [the blind person] to detect changes in elevation, obstacles and changes in surface texture,” she said. “It is a tool used for previewing the environment.”
Grayson Naff practices using his white cane at his school as part of the preparations for full vision loss. (Elizabeth Blackburn)
The white cane also signals to others that the person using it has low vision, Witt noted, which makes the person more visible in public places and street crossings.
“It’s important for students to learn to use their white cane with a certified orientation and mobility specialist,” Witt said.
“Practicing using their cane in practical and age-appropriate environments will help them develop the skills needed as they get older and/or their vision changes.”
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Naff was introduced to the white cane in his elementary school gym, and then he walked the halls using it, his mother said.
“His favorite color is red, so he liked how the white cane had red [on it],” Blackburn told Fox News Digital. “He learned how wide to move it, how to hold it, how to use it to hear different materials on the ground and how to fold it up.”
“I was extremely anxious for him to be introduced to the white cane,” said Naff’s mother. “Losing vision can sometimes be an invisible disability, but when you have a white cane, it suddenly becomes real.” (Elizabeth Blackburn)
Witt praised the boy for working hard on his orientation and mobility training.
“The focus has been to ensure that he is navigating his school well and gaining the skills necessary to problem-solve when his vision may be affecting his ability to orient or navigate,” she said.
While the white cane training was an important step for Naff — it was difficult for his mother.
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“I was extremely anxious for him to be introduced to the white cane,” she said.
“Losing vision can sometimes be an invisible disability, but when you have a white cane, it suddenly becomes real.”
“No one prepares you for this — I wake up every day and have to remember that this is our life.”
“Accepting that my son is legally blind — and that if he goes down the typical path of children with Batten disease, he will likely lose all of his vision — is heartbreaking.”
An even more difficult realization, she said, is that loss of vision is only the beginning of the disease’s devastating effects.
Grayson Naff is pictured with his little brother. “The only way we move forward is with hope and the love we have for Grayson,” his mother said. (Elizabeth Blackburn)
“No one prepares you for this,” Blackburn said. “I wake up every day and have to remember that this is our life.”
Her son has also started training in Braille, which allows visually impaired people to read by feeling a system of raised dots.
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Becca King, teacher of the visually impaired at MCESC in Dayton, Ohio, has been helping the boy with his Braille lessons.
“Learning to read Braille is a lot like learning to read print,” she told Fox News Digital. “It’s important to have the fundamentals and to take it step by step.”
“We take pictures, we make memories, we try to live life as normal as possible — but with a crack in our hearts and hope for the future,” said Grayson Naff’s mother. (Emily Blackburn)
“Grayson is a pleasure to work with,” she told Fox News Digital. “He is enthusiastic about learning and is willing to do anything that I ask him to. He has an infectious personality, and he is truly the highlight of my day when I get to see him.”
She added, “He is a bright light to all who know him.”
Naff also has an aide at school who helps him scribe — meaning he writes down what the boy says.
The young student also has a portable desktop magnifying device that magnifies and changes contrast to help him see his papers at school.
Ongoing care
Every six months, Naff and his family drive seven hours to see his ophthalmologist at the University of Iowa, who specializes in juvenile inherited eye disease.
During each visit, “Grayson goes through a whole day of eye exams to test if his vision has changed,” Blackburn said.
Their next visit is scheduled for May.
“The only way we move forward is with hope and the love we have for Grayson.”
“The anxiety and anticipation is challenging, because we want to accept Grayson’s vision however it may be, but our hope is that he’ll have his vision for as long as possible,” his mother said.
Naff is also taking Miglustat, a medication that could help ease or slow down symptoms.
Cost is a concern, though. Since the drug is not yet FDA-approved for use with Batten disease, it has a hefty co-pay.
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“If insurance doesn’t cover it, it’s about $100 per pill, or $9,000 each month,” Blackburn said.
There is currently no cure for Batten disease, with life expectancy typically in the mid-teens to early 20s.
Grayson Naff’s family created an organization, Guiding Grayson, to help raise awareness and funds for a cure. The boy has remained positive and happy throughout his journey with Batten disease. (Emily Blackburn)
“The only way we move forward is with hope and the love we have for Grayson,” said Blackburn.
“We take pictures, we make memories, we try to live life as normal as possible — but with a crack in our hearts and hope for the future.”
There are resources available through private agencies, schools and government agencies to assist with the difficult transition that comes with vision loss, Witt pointed out.
“It is helpful to find a community of people who are going through a similar experience and can provide advice and stories of hope,” she added.
Anyone wanting more information about Grayson Naff’s journey and Batten disease can visit guidinggrayson.com.
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The key to feeling better in a fast, overstimulated world might be surprisingly simple: Live a little more like your grandparents.
A growing social media trend, dubbed “nonnamaxxing,” draws inspiration from the slower, more intentional rhythms associated with an Italian grandmother.
The lifestyle is often linked to activities like preparing home-cooked meals, spending time outdoors and making meaningful connections.
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“Nonnamaxxing is a 2026 trend that embraces the slower, more intentional lifestyle of an Italian grandmother (a Nonna). Think cooking from scratch, long family meals, daily walks, gardening and less screen time,” Erin Palinski-Wade, a New Jersey-based registered dietitian, told Fox News Digital.
Nonnamaxxing, derived from the name for an Italian grandmother, is a trend that incorporates lifestyle habits hundreds of years in the making. (iStock)
Stepping away from screens and toward real-world interaction can have measurable benefits, according to California-based psychotherapist Laurie Singer.
“We know that interacting with others in person, rather than spending time on screens, significantly improves mental health,” she told Fox News Digital, adding that social media often fuels comparison and lowers self-esteem.
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Living more like previous generations isn’t purely driven by nostalgia. Cooking meals from scratch, for example, has been linked to better nutrition and more mindful eating patterns.
Adopting traditional mealtime habits can improve diet quality and support both physical and mental health, especially when meals are shared regularly with others, Palinski-Wade noted.
One longevity expert stresses that staying healthy isn’t just about food — it’s also about joy and community. (iStock)
There’s also a psychological benefit to slowing down and focusing on one task at a time. Anxiety often stems from unfinished or avoided tasks, Singer noted, and engaging in hands-on activities can counteract that.
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“Nonnamaxxing encourages us to be present around a task, like gardening, baking or knitting, or just taking a mindful walk, that delivers something ‘real,’” she said.
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Palinski-Wade cautions against turning the trend into another source of pressure, noting that a traditional “nonna” lifestyle often assumes a different pace of life.
The key, she said, is adapting the mindset, not replicating it perfectly.
Nonnamaxxing, derived from the name for an Italian grandmother, is a trend that incorporates lifestyle habits hundreds of years in the making. (iStock)
The goal is to reintroduce small, intentional moments that make you feel better.
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That might mean prioritizing a few shared meals each week, taking a walk without your phone or setting aside time for a simple hobby, the expert recommended.
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Singer added, “Having a positive place to escape to, through whatever activities speak to us and make us happy, isn’t generational – it’s human.”
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Feeling lonely may take a toll on older adults’ memory — but it may not speed up cognitive decline, according to a new study.
Researchers from Colombia, Spain and Sweden analyzed data from more than 10,000 adults ages 65 to 94 across 12 European countries and found those who reported higher levels of loneliness did worse on memory tests at the start of the study, according to research published this month in the journal Aging & Mental Health.
Over a seven-year period, however, memory decline occurred at a similar rate regardless of how lonely participants felt.
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“The finding that loneliness significantly impacted memory, but not the speed of decline in memory over time was a surprising outcome,” lead author Dr. Luis Carlos Venegas-Sanabria of the School of Medicine and Health Sciences at the Universidad del Rosario said in a statement.
Loneliness may be linked to memory performance in older adults, a new study suggests. (iStock)
“It suggests that loneliness may play a more prominent role in the initial state of memory than in its progressive decline,” Venegas-Sanabria said, adding that the findings highlight the importance of addressing loneliness as a factor in cognitive performance.
The findings add to debate about whether loneliness contributes to dementia risk. While loneliness and social isolation are often considered risk factors for cognitive decline, research results have been mixed.
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The study looked at data from the long-running Survey of Health, Ageing and Retirement in Europe (SHARE), which tracked 10,217 older adults between 2012 and 2019. Participants were asked to recall words immediately and after a delay to measure memory performance.
Social isolation and loneliness could play a surprising role in cognitive health among seniors. (iStock)
Loneliness was assessed using three questions about how often participants felt isolated, left out or lacking companionship.
About 8% of participants reported high levels of loneliness at the outset. That group tended to be older, more likely to be female and more likely to have conditions such as depression.
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Researchers found that those with higher loneliness had lower scores on both immediate and delayed memory tests at baseline. Still, all groups — regardless of loneliness level — experienced similar declines in memory over time.
The results suggest loneliness may not directly accelerate the progression of memory loss, though it remains linked to poorer cognitive performance overall.
Researchers look at a brain scan at the National Institutes of Health in Bethesda, Maryland. (Saul Loeb/AFP/Getty Images)
Experts warn, however, that the findings should not be interpreted to mean loneliness is harmless.
“The finding that lonely older adults start with worse memory but don’t decline faster is actually the most interesting part of the paper, and I think it’s easy to misread,” said Jordan Weiss, Ph.D., a scientific advisor and aging expert at Assisted Living Magazine and a professor at NYU Grossman School of Medicine.
“It likely means loneliness does its damage earlier in life, well before people show up in a study like this at 65-plus,” Weiss told Fox News Digital.
By older age, long-term social patterns may already be established, making it harder to detect when the effects of loneliness first took hold, an aging expert says. (iStock)
He suggested that by older age, long-term social patterns may already be established, making it harder to detect when the effects of loneliness first took hold.
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“By the time you’re measuring someone in their late 60s, decades of social connection patterns are already baked in,” he said.
Weiss, who was not involved in the research, added that loneliness may coincide with other health conditions, and noted that participants who felt more isolated also had higher rates of depression, high-blood pressure and diabetes. The link, he said, may reflect a cluster of health risks rather than a direct cause.
“While they can go hand-in-hand, it’s not clear that loneliness contributes to dementia,” a psychotherapist says. (iStock)
Amy Morin, a Florida-based psychotherapist and author, said the findings reflect a broader pattern in research on loneliness and brain health, and that the relationship may be more complex than it appears.
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“The evidence shows there’s a link between loneliness and cognitive decline but there’s no direct evidence of a cause and effect relationship,” she said. “So while they can go hand-in-hand, it’s not clear that loneliness contributes to dementia.”
Morin added that loneliness, which can fluctuate, may not be the root of the problem, but rather a symptom of other underlying mental or physical health issues.
Researchers suggested screening for loneliness be incorporated into routine cognitive assessments as one way to support healthy aging. (iStock)
She said staying socially and mentally engaged is crucial for overall brain health.
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“It’s important to be proactive about social activities,” Morin said. “Joining a book club, having coffee with a friend, or attending faith-based services can be a powerful way to maintain connections in older age.”
The researchers also suggested screening for loneliness be incorporated into routine cognitive assessments as one way to support healthy aging.
Fox News Digital reached out to the researchers for comment.
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