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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Dr. Megan Jack, a neurosurgeon in Cleveland, often works 60 or 70 hours a week. And she’s completely unavailable when she’s in the operating room. That makes it tough to be a caregiver for her 76-year-old mother, who lives in a separate unit on Dr. Jack’s property, 30 minutes away from the hospital.
To help care for her mother, who has Alzheimer’s disease, Dr. Jack uses an array of high-tech tools, some of which didn’t exist just a few years ago. She manages her mother’s medications with a smart pill box. She changes her television channels with an app, sends appointment reminders through a digital message board — and, with her mother’s blessing, uses cameras for communication and monitoring.
“It’s been invaluable that I can both make sure she’s safe and make sure everything is going well,” Dr. Jack said, “but also give her the independence and the freedom that she still deserves.”
America is aging rapidly. Roughly 11,000 people are turning 65 each day in the United States. And many of them — 75 percent of people over 50, according to AARP’s most recent survey, from 2024 — hope to spend their remaining years in the comfort of their homes, rather than in assisted-living or other care facilities.
One thing that could help fulfill those wishes is the budding field of “age tech,” which encompasses tools that support older adults. Industry experts say that age tech is making homes safer for older adults and is easing the minds of their caregivers, especially those who live far away or work outside the home.
Dr. Jack said that age tech had “really allowed me to integrate caregiving into my life, as opposed to caregiving taking over my life.”
The age tech boom
If older adults don’t have loved ones who are both close by and able to help, they might believe they don’t have a ton of options. They can live independently, or, if they can afford it and qualify medically, they can move to an assisted-living facility or a nursing home, without a lot of choices in between. In-home help can be expensive without Medicaid and can also be difficult to find, given the serious shortage of home care workers.
Age tech can help bridge some important gaps, said Emily Nabors, the associate director of innovation at the National Council on Aging, a nonprofit advocacy group. Already, AARP reports that 25 percent of caregivers are remotely monitoring their loved ones with apps, videos or wearables, nearly double the percentage from five years ago.
“We used to say homes are the health care settings of the future, but they really are health care settings now,” Ms. Nabors said. “Aging in place is very realistic.”
More than 700 companies are in AARP’s AgeTech Collaborative, a group that connects businesses, nonprofits and funders to help get new technologies off the ground. Altogether, the collaborative’s start-ups have raised nearly $1 billion in the past four years.
The products include smart walkers, glasses with lenses that provide real-time captions of conversations for those with hearing issues, and a concierge service that connects older people to drivers and deliveries, even if they don’t have a smartphone.
Ms. Nabors does foresee some affordability and access barriers to age tech, including the lack of high-speed internet in rural areas, but she said one vital resource would be local aging agencies, which can offer advice and, sometimes, free support.
Janet Marasa leaned on the agency near her home in Rockland County, N.Y., to get a free robotic pet for her mother, Carol DeMaio, 80, who has dementia. The pets, manufactured by a company called Joy for All, aim to offer emotional support without the upkeep.
Ms. DeMaio named the robotic dog Sabrina, after a golden retriever who died. The new Sabrina stays at the foot of her bed at night. As soon as Ms. DeMaio stirs awake, the dog reacts. “She said it gives her a reason to get up in the morning,” Ms. Marasa said.
The dog has been a boon to her, too. “It provides comfort and interaction that I can’t provide every second,” said Ms. Marasa, who lives with her mother but works full time for the county government. “It gives her something that she can feel like is totally her own.”
In Broward County, Fla., where the population of residents over 85 is expected to nearly triple over the next few decades, the local agency on aging has used state and federal money and private grants to provide technologies to nearly 4,000 of the county’s seniors at no cost.
Its offerings include a company that uses radar to sense falls and a program that allows seniors to make video calls through their televisions.
“The possibilities are endless,” Charlotte Mather-Taylor, the agency’s chief executive, said. “It’s pretty great to see all the new technology coming out so quickly, and I think that can only benefit our older population and also our caregivers.”
Here comes A.I.
Even technologies not specifically marketed as age tech can help older adults maintain their independence, said Laurie Orlov, founder of the blog Aging and Health Technology Watch. She pointed to video-calling and telehealth platforms; remotely controlled thermostats and lights; and smart speakers, doorbells and watches.
“All technology can be customized to help older adults stay longer in their homes and help their family members feel good about it, or at least tolerate it,” Ms. Orlov said.
That will only become more true with the continued proliferation of artificial intelligence, Ms. Orlov added. Some older adults are already using conversational A.I. to get answers about things like the weather or their medications. (Relying too heavily on A.I. can, however, have negative consequences because chatbots often give flawed medical advice and can lead patients astray.) A.I. can also assist in pattern detection: alerting caregivers to signals that might indicate declines in someone’s cognition or mental health, such as changing their speech pattern or leaving the house less frequently.
One A.I.-powered age tech tool is ElliQ, a tabletop companion robot that looks like a sleek silver desk lamp with a screen. About a year and a half ago, Camille Wolsonovich got one for free, thanks to a local nonprofit, for her 90-year-old father, Bill Castellano. He lives alone in a senior community.
Ms. Wolsonovich, who runs a consulting business, relies on ElliQ to lead her father in exercises and remind him to take his pills and drink water. The robot also asks her father about his sleep and mood via automated check-ins.
“Everything’s just another layer that gives us more confidence, from a caregiving standpoint, that he’s good,” Ms. Wolsonovich said. “I don’t have to necessarily track everything all the time and be overbearing.”
As for Mr. Castellano? He plays trivia digitally and converses daily with ElliQ. The robot, which has a friendly female voice, asks questions, cracks jokes and remembers his likes, dislikes and friends. “She’s great company,” he said. “Everybody around me wants one.”
What about ethical concerns?
Clara Berridge studies the ethics of age tech at the University of Washington.
She has many privacy concerns, namely that most direct-to-consumer products aren’t subject to medical privacy laws, despite being privy to sensitive health information. Though she hopes the federal government will eventually step in to regulate these products, as it has in other countries, the onus remains on the consumer for now.
And even if an age tech product isn’t selling mom’s personal data to the lowest bidder, Dr. Berridge said there’s still the question of whether certain tools are ethical.
“It’s really important for caregivers to recognize that using these new technologies that give them more information about someone can represent greater intrusion into someone’s life,” she said.
What may be well-intentioned monitoring could reveal information that an older adult would rather keep private, such as issues with incontinence, or the comings and goings of a romantic partner.
“It can lead to somebody feeling infantilized,” Dr. Berridge said. “Like there’s not a place to hide within your own home.”
Her research shows that adult children often underestimate how much their parents can understand about technology and how much they want to be involved in tech-related decisions.
She encouraged caregivers to have transparent conversations about privacy implications and to avoid ultimatums or the idea that any decision must be permanent. She said caregivers should put themselves in their parents’ shoes: Is this something they’d want their own children monitoring?
Dr. Berridge is working on an advanced directive for technology, which outlines older people’s wishes for how technology is used in their care. Ultimately, she hopes that questions about age tech will become a standard part of planning for the future.
“If you’re at the start of what, for many people, ends up being a long road of supporting someone potentially through the end of their life,” she said, “seeking to understand each other’s concerns and priorities better is time very well spent.”
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A distraught mother who thought she was having a heart attack was instead hospitalized with broken heart syndrome — otherwise known as takotsubo syndrome (TTS) — less than a year after her veteran son tragically took his own life.
Dawn Turner, 57, of the U.K., lost her son in August of last year.
Just last month, the mom of three awoke with “unbearable” chest pains, she said — and called an ambulance, worried she was going into cardiac arrest. But when she arrived at the hospital, doctors told her she was suffering from the effects of grief caused by a broken heart, as news agency SWNS reported.
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TTS is a temporary, reversible heart condition often triggered by extreme emotional or physical stress, such as grief, fear or severe illness, according to experts.
Symptoms usually mimic a heart attack, with sudden and severe chest pain and shortness of breath the most common — and it primarily affects women over the age of 50.
A mom whose soldier son took his own life feared she was suffering cardiac arrest — only to be told by hospital doctors that she was feeling the effects of grief caused by a broken heart. Dawn Turner, mother of deceased soldier Rob Homans, is pictured above, April 2026. (SWNS)
Turner, of Eckington in Worcester, said, “I was [sitting] downstairs earlier that night and thought I had a bit of indigestion. I went to bed and just couldn’t get comfortable — I was breaking out in a sweat and had heart palpitations.
“Then, around midnight, I had pain down my arm and in my jaw. I was still putting it down to indigestion… My partner Paul asked me if I was all right, and I said, ‘I think I’m having a heart attack.’”
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She said she couldn’t catch her breath — “and my heart felt as though it was missing a beat and then [started] thudding again. For those moments, I truly believed I was having a heart attack.”
“Your heart is all over the place — there’s an extra beat,” Turner was told.
She said her partner called emergency services, and an ambulance arrived within five minutes.
“They came in and linked me up to an ECG. They said, ‘Your heart is all over the place — there’s an extra beat, and it’s all over the place,’” she said, as SWNS reported.
Turner was rushed to the hospital by ambulance.
Turner is shown with her son in full dress uniform. He worked as an artilleryman and spent 10 years in the U.K.’s Royal Horse Artillery after joining in 2006. He was battling mental health challenges after his military service, and ultimately took his own life. (SWNS)
In emergency care, Turner was also given blood tests.
She added, “They came back and said I didn’t have the enzymes produced from a heart attack in my blood. But they said there [was] something going on.”
After undergoing more tests and seeing a cardiologist, Turner was told she had takotsubo syndrome.
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“I told [the doctor] that my heart feels broken. I told her about [my son] Rob, and she said it’s exactly that. She said it’s a real thing, and that I’d been under so much stress. The body can only take so much, and the grief and the stress can be quite physical.”
Turner’s son committed suicide in August 2025 after struggling to get help with his mental health.
He spent 10 years in the Royal Horse Artillery after joining in 2006, when he worked as an artilleryman.
Turner’s son did two tours of duty in Afghanistan, she said. After he returned to civilian life, he began suffering from a number of health conditions. She’s shown above with a flower-draped memorial to her son. (SWNS)
He did two tours of duty in Afghanistan, she said, and returned to civilian life in 2016 before suffering several worsening health conditions.
Turner, who is also the CEO of a veterans charity called Stepway, “When he left the army, he got married, and they settled down in London. He walked straight into a job as a delivery driver. But then his health took a downward spiral, and he started having digestive troubles.”
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He was eventually told he had PTSD — but those symptoms may be similar to those of mild traumatic brain injury, Turner said.
“He was deaf in one ear from using the guns,” she said. “He realized he was putting so much pressure on his marriage, so he moved back up with me. He started to build himself up — then COVID hit.”
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Turner said there were unfortunate delays as her son tried to get access to various services and facilities.
“When people lose loved ones, you’re obviously distraught, but you eventually find closure,” she said, per SWNS. “I found peace when I lost my sister in 2015. But with Rob, I can’t find closure because there’s no justice there.”
“I had never really understood that a person could become so overwhelmed by stress and grief that it physically affects the heart,” said the grieving mom. “Broken heart syndrome can look and feel like a heart attack.” (iStock)
Turner is now on the mend and hopes to be fully recovered in a couple of weeks, SWNS reported.
“Until that moment, I had never really understood that a person could become so overwhelmed by stress and grief that it physically affects the heart,” she shared. “Broken heart syndrome can look and feel like a heart attack. It was a warning sign for me, and for anyone. It can change the shape of one of your heart chambers … it can cause some serious damage.”
She added, “The cardiologist told me that thankfully, my heart itself is healthy and there was no damage, but that it will take around two weeks to a month for my heart to reboot itself.”
“Maybe the extra [heart]beat is for Rob. You are carrying on living for him,” her partner told her.
Turner was told she needed to rest, seek counseling and make lifestyle changes to reduce stress.
“Things have settled down, and I’m taking things easy — I’m pacing myself now, and I feel a lot better. Paul said, ‘Maybe the extra beat is for Rob. You are carrying on living for him.’”
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Turner said, “That broke me and healed me a little bit all at once.”
Fox News Digital previously reported that broken heart syndrome, which causes the heart to temporarily weaken, has been linked to the brain’s reaction to stress, as studies have found.
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In an article published in the European Heart Journal in March 2019, Swiss researchers said they found that the syndrome is linked to the way the brain communicates with the heart.
Broken heart syndrome, which causes the heart to temporarily weaken, has been linked to the brain’s reaction to stress, studies have found. (iStock)
Caused by intense emotional events, TTS is a rare, temporary condition that weakens the left ventricle and disrupts its normal pumping function.
The syndrome causes the heart’s main pumping chamber to change shape and get larger. The heart muscle becomes weaker, and its pumping action loses strength.
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Symptoms include sudden, intense chest pain, pressure or heaviness in the chest, along with shortness of breath.
It is treated with beta blockers and blood-thinning medicine to reduce risks of clots and other flareups.
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