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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A new review suggests that the type of fat you eat may affect your risk of developing type 2 diabetes.
Saturated fats rich in palmitic acid – the most common saturated fatty acid in U.S. foods – appear to make it harder for the body to respond to insulin.
Meanwhile, monounsaturated fats rich in oleic acid — such as those found in olive oil — may help protect against insulin resistance, the review concluded.
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“Palmitic acid is found in meats, dairy products, cocoa butter and in the form of palm oil in foods, including margarine, cereal, sweets, baked goods and fast foods,” Tanya Freirich, a registered dietitian nutritionist in Charlotte, North Carolina, told Fox News Digital. She was not involved in the review.
“Oleic acid, on the other hand, is in higher concentration in foods like olive oil, canola oil, nuts, sunflower seeds, eggs, olive, avocados and also in meats (beef, chicken, pork), milk, cheese and pasta.”
Saturated fats rich in palmitic acid – the most common saturated fatty acid in U.S. foods – appear to make it harder for the body to respond to insulin. (iStock)
The review, which was published in the journal Trends in Endocrinology & Metabolism, was led by researchers from the University of Barcelona and the CIBER Area for Diabetes and Associated Metabolic Diseases (CIBERDEM) in Spain.
The findings suggest that fat quality may be more important than total fat quantity when it comes to metabolic health and diabetes risk.
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This appears to support the idea that diets rich in monounsaturated fats, such as the Mediterranean diet, may contribute to lower rates of type 2 diabetes.
“Palmitic acid promotes several molecular processes that impair insulin action,” study investigator Dr. Manuel Vázquez-Carrera, from the Department of Pharmacology, Toxicology and Therapeutic Chemistry at the University of Barcelona, told Fox News Digital.
“Palmitic acid is found in meats, dairy products, cocoa butter and in the form of palm oil in foods, including margarine, cereal, sweets, baked goods and fast foods,” a nutritionist said. (iStock)
Too much palmitic acid can cause harmful fat byproducts to build up in the body, which can impair the body’s ability to respond to insulin, he warned. This makes it harder to control blood sugar and increases the risk of insulin resistance and type 2 diabetes.
“It also promotes inflammation, oxidative stress, mitochondrial dysfunction and cellular stress responses, which contribute to insulin resistance and β-cell dysfunction,” Vázquez-Carrera added.
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By contrast, oleic acid – a hallmark of the Mediterranean diet – does not have these harmful effects, according to the researcher.
“In fact, oleic acid can counteract many of the detrimental effects triggered by palmitic acid, by promoting the storage of fatty acids in relatively inert triglycerides, preserving mitochondrial function and reducing inflammation,” he said.
“All sources of fat in our diet contain a mix of saturated and unsaturated fatty acids.”
Freirich confirmed that the review is consistent with previous research supporting the use of olive oil in the diet for metabolic benefits.
“Also confirming previous research, the consumption of saturated fats is associated with some negative metabolic changes,” she told Fox News Digital.
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Given the complexity of foods and diets, there is an overlap between foods that contain both types of fatty acids, the nutritionist noted.
“Palmitic acid and oleic acid can both be found in olive oil, baked goods and fast foods, in differing amounts,” she said. “All sources of fat in our diet contain a mix of saturated and unsaturated fatty acids.”
Study limitations
Vázquez-Carrera noted that these findings come from a review of numerous experimental, clinical and epidemiological studies rather than a single clinical trial.
“One important limitation is that much of the mechanistic evidence comes from cell culture and animal studies,” he said.
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“Although these studies provide valuable insights into how specific fatty acids affect insulin signaling, further human intervention studies are needed to confirm the extent to which these mechanisms operate in everyday dietary settings.”
In addition, many of the human studies in the review relied on self-reported dietary intake, which can introduce inaccuracies.
Type 2 diabetes develops over many years, with genetics, lifestyle and environmental factors all playing a role, the researcher noted. (iStock)
“Another challenge is that people consume foods containing complex mixtures of fatty acids and bioactive compounds rather than isolated fatty acids,” Vázquez-Carrera added. “Therefore, it remains difficult to fully disentangle the specific contribution of individual fatty acids in free-living populations.”
Nutritional recommendations
The review’s findings appear to support current dietary recommendations that emphasize replacing part of the saturated fat intake with unsaturated fats, according to Vázquez-Carrera.
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“This means favoring dietary patterns rich in foods such as extra-virgin olive oil, nuts, seeds, legumes, vegetables, fruits and fish, while limiting excessive consumption of foods rich in saturated fats, especially highly processed foods,” he advised.
The review does not suggest that a single nutrient alone determines diabetes risk, the researcher pointed out.
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“Rather, maintaining a healthy body weight, engaging in regular physical activity and following an overall healthy dietary pattern, such as the Mediterranean diet, remain fundamental strategies for preventing insulin resistance and type 2 diabetes.”
Type 2 diabetes develops over many years, with genetics, lifestyle and environmental factors all playing a role, Vázquez-Carrera noted.
Improving the quality of dietary fat intake could prove to be an effective strategy for reducing type 2 diabetes risk, the review suggests. (iStock)
“Future research should move beyond simply classifying fats as ‘good’ or ‘bad’ and instead focus on understanding how specific fatty acids, their dietary sources and their interactions within whole dietary patterns affect metabolic health,” he said.
Improving the quality of dietary fat intake could prove to be an effective strategy for reducing type 2 diabetes risk, according to the researcher.
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“A simple takeaway for consumers is to swap out foods high in saturated fat more often with foods rich in heart-healthy fats, like olive oil, nuts and avocados, to better support blood sugar and metabolic health,” advised New Jersey-based registered dietitian Erin Palinski-Wade, who was also not involved in the review.
Anyone at a higher risk for type 2 diabetes should consult a healthcare provider for personalized guidance on nutrition, exercise and other preventive measures, experts say.
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