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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Long before the Black Death killed millions across Europe in the Middle Ages, an earlier, more elusive version of the plague spread across much of Eurasia.
For years, scientists were unsure how the ancient disease managed to spread so widely during the Bronze Age, which lasted from roughly 3300 to 1200 B.C., and stick around for nearly 2,000 years, especially since it wasn’t spread by fleas like later plagues. Now, researchers say a surprising clue may help explain it, a domesticated sheep that lived more than 4,000 years ago.
Researchers found DNA from the plague bacterium Yersinia pestis in the tooth of a Bronze Age sheep discovered in what is now southern Russia, according to a study recently published in the journal Cell. It is the first known evidence that the ancient plague infected animals, not just people, and offers a missing clue about how the disease spread.
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“It was alarm bells for my team,” study co-author Taylor Hermes, a University of Arkansas archaeologist who studies ancient livestock and disease spread, said in a statement. “This was the first time we had recovered the genome from Yersinia pestis in a non-human sample.”
A domesticated sheep, likely similar to this one, lived alongside humans during the Bronze Age. (iStock)
And it was a lucky discovery, according to the researchers.
“When we test livestock DNA in ancient samples, we get a complex genetic soup of contamination,” Hermes said. “This is a large barrier … but it also gives us an opportunity to look for pathogens that infected herds and their handlers.”
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The highly technical and time-consuming work requires researchers to separate tiny, damaged fragments of ancient DNA from contamination left by soil, microbes and even modern humans. The DNA they recover from ancient animals is often broken into tiny pieces sometimes just 50 “letters” long, compared to a full human DNA strand, which contains more than 3 billion of those letters.
Animal remains are especially tough to study because they are often poorly preserved compared to human remains that were carefully buried, the researchers noted.
The finding sheds light on how the plague likely spread through close contact between people, livestock and wild animals as Bronze Age societies began keeping larger herds and traveling farther with horses. The Bronze Age saw more widespread use of bronze tools, large-scale animal herding and increased travel, conditions that may have made it easier for diseases to move between animals and humans.
When the plague returned in the Middle Ages during the 1300s, known as the Black Death, it killed an estimated one-third of Europe’s population.
The discovery was made at Arkaim, a fortified Bronze Age settlement in the Southern Ural Mountains of present-day Russia near the Kazakhstan border. (iStock)
“It had to be more than people moving,” Hermes said. “Our plague sheep gave us a breakthrough. We now see it as a dynamic between people, livestock and some still unidentified ‘natural reservoir’ for it.”
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Researchers believe sheep likely picked up the bacteria from another animal, like rodents or migratory birds, that carried it without getting sick and then passed it to humans. They say the findings highlight how many deadly diseases begin in animals and jump to humans, a risk that continues today as people move into new environments and interact more closely with wildlife and livestock.
“It’s important to have a greater respect for the forces of nature,” Hermes said.
The study is based on a single ancient sheep genome, which limits how much scientists can conclude, they noted, and more samples are needed to fully understand the spread.
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The researchers plan to study more ancient human and animal remains from the region to determine how widespread the plague was and which species may have played a role in spreading it.
Researchers (not pictured) found plague-causing Yersinia pestis DNA in the remains of a Bronze Age sheep. (iStock)
They also hope to identify the wild animal that originally carried the bacteria and better understand how human movement and livestock herding helped the disease travel across vast distances, insights that could help them better anticipate how animal-borne diseases continue to emerge.
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The research was led by scientists at the Max Planck Institute for Infection Biology, with senior authors Felix M. Key of the Max Planck Institute for Infection Biology and Christina Warinner of Harvard University and the Max Planck Institute for Geoanthropology.
The research was supported by the Max Planck Society, which has also funded follow-up work in the region.
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Cases of gout are rising in younger individuals, according to a global study.
The condition, which is a type of inflammatory arthritis, steadily increased in people aged 15 to 39 between 1990 and 2021, researchers in China announced.
Although rates vary widely between countries, the total number of young people with the condition is expected to continue rising through 2035.
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The study, published in the journal Joint Bone Spine, investigated 2021 data from the Global Burden of Disease (GBD), spanning 204 countries within the 30-year timeframe.
The data measured gout prevalence, incidence and years lived with disability, tracking global trends over time. The results showed a global increase across all three outcomes.
Gout is expected to continue rising in young people through 2035. (iStock)
Prevalence and disability years increased by 66%, and incidence rose by 62%. In 2021, 15- to 39-year-olds accounted for nearly 14% of new gout cases globally, the study found.
Men from 35 to 39 years old and people in high-income regions had the highest burden, but high-income North America topped the list for highest rates.
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Men were also found to have lived more years with gout due to high BMI, while women tended to have the condition as a link to kidney dysfunction, the study noted.
The total number of cases is expected to increase globally due to population growth, but the study projected that rates per population would decrease.
The researchers noted that data quality, especially in low-income settings, could have posed a limitation to the broad GBD data.
What is gout?
Gout is a common form of arthritis involving sudden and severe attacks of pain, swelling, redness and tenderness in the joints, according to Mayo Clinic. It most often occurs in the big toe.
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The condition occurs when urate crystals accumulate in the joint. These form when there are high levels of uric acid in the blood, which the body produces when it breaks down a natural substance called purines.
A gout flare-up can happen at any time, often at night, causing the affected joint to feel hot, swollen, tender and sensitive to the touch.
Urate crystals, described as sharp and needle-like, build up in the joint, causing intense pain and swelling. (iStock)
Purines can also be found in certain foods, like red meat or organ meats like liver and some seafood, including anchovies, sardines, mussels, scallops, trout and tuna, according to the Mayo Clinic. Alcoholic drinks, especially beer, and drinks sweetened with fruit sugar can also lead to higher uric acid levels.
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Uric acid will typically dissolve in the blood and pass through the kidneys into urine, but when the body produces too much or too little uric acid, it can cause a build-up of urate crystals. These are described by the Mayo Clinic as sharp and needle-like, causing pain, inflammation and swelling in the joint or surrounding tissue.
Risk factors for gout include a diet rich in high-purine foods and being overweight, which causes the body to produce more uric acid and the kidneys to have trouble eliminating it.
Experts urge patients to seek medical attention for gout flare-ups. (iStock)
Certain conditions like untreated high blood pressure, diabetes, obesity, metabolic syndrome and heart and kidney diseases can increase the risk of gout, as well as certain medications.
A family history of gout can also increase risk. Men are more likely to develop the condition, as women tend to have lower uric acid levels, although symptoms generally develop after menopause.
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Untreated gout can cause worsening pain and joint damage, experts caution. It may also lead to more severe conditions, such as recurrent gout, advanced gout and kidney stones.
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The Mayo Clinic advises patients to seek immediate medical care if a fever occurs or if a joint becomes hot and inflamed, which is a sign of infection. Certain anti-inflammatory medications can help treat gout flares and complications.
Fox News Digital reached out to the researchers for comment.
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