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Ohio boy, 8, prepares for blindness: ‘It’s heartbreaking,’ his mom says

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Ohio boy, 8, prepares for blindness: ‘It’s heartbreaking,’ his mom says

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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.

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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)

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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.

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“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 white cane training

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.”

Grayson Naff white cane training

“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.”

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An even more difficult realization, she said, is that loss of vision is only the beginning of the disease’s devastating effects.

Grayson Naff and brother

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.

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“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.”

Grayson Naff

“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.

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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. 

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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.

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Grayson Naff split

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.

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Anyone wanting more information about Grayson Naff’s journey and Batten disease can visit guidinggrayson.com.

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CDC investigating fake Botox injections: ‘Serious and sometimes fatal’

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CDC investigating fake Botox injections: ‘Serious and sometimes fatal’

Fake Botox is on the CDC’s radar.

The U.S. Centers for Disease Control and Prevention (CDC) announced on Friday that it is investigating reports of “a few botulism-like illnesses in several states resulting from botulinum toxin injections (commonly called ‘Botox’) administered in non-medical settings,” the agency said in a statement.

“We are coordinating a multi-state outbreak investigation,” the agency added. 

WHAT EXACTLY IS BOTOX?

Illnesses have been reported to the Tennessee and Illinois health departments, which are working with the CDC and the Food and Drug Administration (FDA) on the investigation, the CDC noted.

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The CDC said it is investigating reports of “a few botulism-like illnesses in several states resulting from botulinum toxin injections (commonly called ‘Botox’) administered in non-medical settings,” the agency said in a statement. (REUTERS/Tami Chappell)

In Tennessee, four patients sought medical care after experiencing “botulism-like signs and symptoms” after receiving Botox injections for cosmetic purposes, according to an online statement from the Tennessee Department of Health.

Two of the patients were hospitalized.

“Do not go to an unlicensed provider. If the offer seems too good to be true, it probably is.”

“Joint investigations have identified concerns about use of counterfeit products or products with unclear origin administered in non-medical settings such as homes or cosmetic spas,” the statement said.

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The Illinois Department of Public Health issued a similar statement after two patients reported receiving potentially counterfeit Botox injections in LaSalle County.

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The two individuals reported symptoms that included blurred/double vision, droopy face, fatigue, difficulty breathing, shortness of breath and hoarse voice, the statement said.

The patients, both of whom were hospitalized, received the injections from a licensed nurse who was “performing work outside her authority.”

Botulism is a “serious and sometimes fatal” illness that occurs when a toxin attacks the body’s nerves, according to the CDC. (iStock)

Additional cases have been reported in Kentucky, Washington and Colorado.

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“The sources of these botulinum toxin products are unknown or unverified at this time,” the CDC stated. 

“Questions about product regulation and product investigation should be directed to the FDA.”

What is botulism?

Botulism is a “serious and sometimes fatal” illness that occurs when a toxin attacks the body’s nerves, according to the CDC.

Initial symptoms usually include muscle weakness around the eyes, face, mouth and throat, which could also spread to the neck, arms, torso and legs.

“If the wrong patient begins having trouble with their breathing, it could be fatal.”

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Other symptoms can include blurred or double vision, difficulty breathing, trouble swallowing, drooping eyelids, slurred speech and difficulty moving the eyes.

“What’s particularly concerning are the respiratory problems that some are experiencing,” Dr. Salar Hazany, a certified dermatologist and reconstructive surgeon at Scar Healing Institute in Beverly Hills, told Fox News Digital.

“If the wrong patient begins having trouble with their breathing, it could be fatal.”

Botox injection

Botox is made from a specific type of Clostridium botulinum, a bacteria that produces paralysis in the muscles where it is injected. (iStock)

Dr. Craig Lehrman, director of aesthetic surgery at The Ohio State University Wexner Medical Center, noted that fake Botox has been an issue since the early 2000s.

“Unfortunately, I treat several patients a year who have received non-approved injectables of things they are told to be safe, which ends up having serious consequences,” he told Fox News Digital.

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“It has mostly been linked to injections in settings such as someone’s home or a poorly regulated med spa.”

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Botox is made from a specific type of Clostridium botulinum, a bacteria that produces paralysis in the muscles where it is injected, he said.

“The people receiving the presumed counterfeit Botox are suffering from an illness that is similar to botulism, caused by the same bacteria,” he said.

Botulinum toxin

There are strict safety criteria for the use and storage of Botox, and serious risks come with the injection of fraudulent or poorly managed products, an expert warned.  (iStock)

There are strict safety criteria for the use and storage of Botox, and serious risks come with the injection of fraudulent or poorly managed products, Lehrman warned. 

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“Botulism can carry detrimental effects ranging from infection, to permanent deformity, to serious wound formation.”

Tips for safe Botox use

“​​Cosmetic injections should be an FDA-approved product, administered by licensed providers and in licensed settings,” the CDC stated. 

There has been a large increase in the number of people offering these services who are not board-certified in the fields of plastic surgery, dermatology or ENT, according to Lehrman. 

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“I would advise potential patients to do their research on the person who will be injecting them — and not just search for the cheapest option,” he said. 

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“I would recommend going to a center that has rigorous standards of education and a track record of safety.”

In most cases, Botox injections are safe, according to experts.

Woman at doctor

Anyone who experiences botulism-like symptoms following an injection should seek medical attention, according to health officials. (iStock)

“Laboratory-confirmed cases of systemic botulism occurring after cosmetic or therapeutic injections of botulinum toxin are rare,” the CDC said in its statement.

Millions of injections are performed each year by licensed medical providers and have been shown to be safe when done in the correct manner, Lehrman added.

“Those considering Botox should research the background of the provider and make sure that the practice has not racked up a number of complaints,” added Hazany.  

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“Do not go to an unlicensed provider. If the offer seems too good to be true, it probably is.”

Anyone who experiences botulism-like symptoms following an injection should seek medical attention, according to health officials.

Fox News Digital reached out to Abbvie (manufacturer of Botox), the FDA, the Tennessee Department of Public Health, and the Illinois Department of Public Health requesting comment.

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