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.
For more Health articles, visit www.foxnews.com/health.
Hundreds of deadly virus samples are missing from a laboratory in Australia, the Queensland government announced on Monday.
The government has instructed Queensland Health — Australia’s public health department — to launch an investigation into what’s being described as a “major historical breach of biosecurity protocols,” according to the online media statement.
It was reported that 323 vials of multiple infectious viruses — including Hendra virus, Lyssavirus and Hantavirus — went missing from Queensland’s Public Health Virology Laboratory in August 2023.
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Hendra is a zoonotic (animal-to-human) virus that has only been found in Australia.
Hantavirus is a family of viruses that can lead to serious illness and death, according to the Centers for Disease Control and Prevention, while Lyssavirus is a group of viruses that can cause rabies.
Hundreds of deadly virus samples are missing from a laboratory in Australia, the Queensland government announced. (iStock)
The lab where the samples went missing provides “diagnostic services, surveillance and research for viruses and mosquito and tick-borne pathogens of medical importance,” the release stated.
It is not known whether the infectious samples were stolen or destroyed, the statement said, and there is “no evidence of risk to the community.”
The government has launched a “Part 9 investigation.”
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“With such a serious breach of biosecurity protocols and infectious virus samples potentially missing, Queensland Health must investigate what occurred and how to prevent it from happening again,” Minister Timothy Nicholls said in the release.
“The Part 9 investigation will ensure nothing has been overlooked in responding to this incident and examine the current policies and procedures in operation today at the laboratory.”
“This investigation will also consider regulatory compliance and staff conduct.”
The Lyssavirus family contains the rabies virus, which is almost universally fatal in humans if they do not receive treatment in time. (iStock)
Nicholls added that Queensland Health has taken “proactive measures,” including retraining staff on required regulations and conducting audits to ensure correct storage of materials.
Sam Scarpino, PhD, director of AI and life sciences at Northeastern University in Boston, confirmed that the situation in Australia amounts to a “critical biosecurity lapse.”
“Given the limited ability for any of these pathogens to transmit from person to person, the risk of an epidemic is very low.”
“The pathogens reported missing are all high-consequence and could pose a threat to the public,” he told Fox News Digital.
The three pathogens can have very high fatality rates in humans, Scarpino said, but they do not transmit readily from person to person.
Hendra is a zoonotic (animal-to-human) virus that has only been found in Australia. (iStock)
“Some hantaviruses have case fatality rates of up to 15%, or over 100 times more lethal than COVID-19, while others are more similar to COVID-19 in terms of severity,” he said.
There is also a high risk to animals and livestock from all three pathogens, he added.
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The Lyssavirus family contains the rabies virus, which is almost universally fatal in humans if they do not receive treatment in time, the expert noted.
“Given the limited ability for any of these pathogens to transmit from person to person, the risk of an epidemic is very low,” Scarpino said.
“It’s clear that we need quite a bit more investment and transparency related to pathogen biosecurity,” one expert said. (iStock)
“However, Hendra virus — along with certain members of the Hantavirus and Lyssavirus family — can be very severe in humans and animals.”
Chief Health Officer Dr. John Gerrard reiterated in the media statement that there is no evidence of public risk.
“It’s important to note that virus samples would degrade very rapidly outside a low temperature freezer and become non-infectious,” he said.
“It’s very unlikely that samples were discarded in general waste, as this would be completely outside routine laboratory practice.”
Hantavirus is a family of viruses that can lead to serious illness and death, according to the Centers for Disease Control and Prevention. (iStock)
There have been no human cases of Hendra or Lyssavirus in Queensland over the past five years, Gerrard noted, and no confirmed Hantavirus infections “ever in Australia.”
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Despite the low risk, Scarpino said, “It’s important to understand where these samples ended up, to confirm that there is no longer a risk of exposure.”
“While I applaud the Australian government for taking this seriously, it’s unacceptable that it took over a year for news of the breach to be made public.”
“The pathogens reported missing are all high-consequence.”
There have been similarly high-profile biosecurity lapses in the U.S., Scarpino noted.
“It’s clear that we need quite a bit more investment and transparency related to pathogen biosecurity,” he added.
For more Health articles, visit www.foxnews.com/health
Fox News Digital reached out to the Queensland government requesting further comment.
Fentanyl has made headlines for driving overdose deaths, but the Centers for Disease Control and Prevention (CDC) is warning of the rise of an even deadlier drug.
Last year, nearly 70% of all U.S. overdose deaths were attributed to illegally manufactured fentanyls (IMFs). One of those was carfentanil, an altered version of fentanyl that is said to be 100 times more potent, the CDC warned in a Dec. 5 alert.
Deaths from carfentanil rose by more than 700% in the past year, according to the same source — there were 29 deadly overdoses between January and June 2023, and 238 in that same time frame in 2024.
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This data came from the CDC’s State Unintentional Drug Overdose Reporting System (SUDORS).
The numbers could actually be higher, as the 2024 data is preliminary and not all overdose deaths have been reported, the agency noted.
Carfentanil, an altered version of fentanyl that is said to be 100 times more potent, the CDC warned in a Dec. 5 alert. (iStock)
Since an outbreak of carfentanil-linked deaths in 2016 and 2016, the drug had “largely disappeared” until this recent reemergence, the CDC noted.
Based on the increase in fatal overdoses, the CDC is calling for “rigorous monitoring” of carfentanil and other opioids more potent than fentanyl.
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As with other illicit drugs, its “high profitability” likely drives its prevalence, according to Dr. Chris Tuell, clinical director of addiction services at the University of Cincinnati College of Medicine.
“Very small amounts can produce thousands of doses,” he told Fox News Digital.
“Synthetic opioids like carfentanil are relatively easy to manufacture in illicit labs,” Tuell went on. “Since the drug is a synthetic, it is easier to produce — unlike heroin, which is dependent on a plant like opium.”
Why is carfentanil so dangerous?
Carfentanil is 10,000 more times more potent than morphine and 100 times more potent than fentanyl, Tuell confirmed.
“Even a small amount can be fatal, as it can cause respiratory failure,” he said.
Carfentanil can sometimes be in the form of “pressed pills” that resemble prescription medications, the expert said. (iStock)
One of the major concerns with carfentanil and fentanyl is that they are frequently mixed with other drugs, such as benzodiazepines, cocaine and opioids, which can lead to accidental overdoses, according to Tuell.
“Carfentanil can also resemble cocaine and heroin, so it blends right in with the other drugs,” he warned.
“Even a small amount can be fatal, as it can cause respiratory failure.”
“Even a tiny amount can increase the potency of a drug mixture, leading to a stronger and longer-lasting high.”
Carfentanil often appeals to drug users who have a high tolerance to opioids because they seek a stronger substance, “making the drug attractive despite the risk,” Tuell noted.
How is the drug administered?
Carfentanil can be injected and is frequently mixed with other opioids or heroin, Tuell said. In a powder form, it can be inhaled.
“Inhaling the drug can be quickly risky because it can enter the bloodstream, resulting in an overdose,” Tuell warned. “This can happen intentionally or accidentally, as the drug can become easily airborne.”
Carfentanil can be injected and is frequently mixed with other opioids or heroin, an addiction specialist warned. (iStock)
Carfentanil can sometimes be in the form of “pressed pills” that resemble prescription medications, the expert said.
“Carfentanil can be lethal at the 2-milligram range depending on the route of administration,” he cautioned.
What parents should know
“Children are now the generation of artificial intelligence and deepfakes, as illicit drugs are posing like regular prescription medications,” Tuell cautioned.
To help protect kids from the dangers of illicit drugs, the expert emphasized the importance of open communication and education.
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“Educate your child about the dangers and risks of drug use, including synthetic opioids like carfentanil,” he advised.
Parents should provide monitoring and supervision of their children, be aware of their social circles and limit unsupervised online activities, Tuell recommended.
Based on the increase in fatal overdoses, the CDC is calling for “rigorous monitoring” of carfentanil and other opioids more potent than fentanyl. (iStock)
“I also believe it is important that parents realize that 84% of individuals with a substance use disorder also have a co-occurring mental health issue,” he added.
“Seeking out mental health services for your child could help address the underlying issues that may have led to a substance use disorder.”
For more Health articles, visit www.foxnews.com/health
The CDC called for specific efforts in preventing deaths from illegally manufactured fentanyls, “such as maintaining and improving distribution of risk reduction tools, increasing access to and retention of treatment for substance use disorders, and preventing drug use initiation.”
Fox News Digital reached out to the Drug Enforcement Administration (DEA) for comment.
December 9th, 2024
To Members of the United States Senate:
We, the undersigned Nobel Laureates, are writing to ask you to
oppose the confirmation of Robert F. Kennedy, Jr. as Secretary of the
Department of Health and Human Services (DHHS).
The proposal to place Mr. Kennedy in charge of the federal agencies
responsible for protecting the health of American citizens and for
conducting the medical research that benefits our country and the
rest of humanity has been widely criticized on multiple grounds. In
addition to his lack of credentials or relevant experience in
medicine, science, public health, or administration, Mr. Kennedy has
been an opponent of many health-protecting and life-saving
vaccines, such as those that prevent measles and polio; a critic of
the well-established positive effects of fluoridation of drinking
water; a promoter of conspiracy theories about remarkably
successful treatments for AIDS and other diseases; and a belligerent
critic of respected agencies (especially the Food and Drug
Administration, the Centers for Disease Control, and the National
Institutes of Health). The leader of DHHS should continue to nurture
and improve— not threaten—these important and highly respected
institutions and their employees.
In view of his record, placing Mr. Kennedy in charge of DHHS would
put the public’s health in jeopardy and undermine America’s global
leadership in the health sciences, in both the public and commercial
sectors.
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