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.
OHIO MOTHER HOPES FOR A CURE TO SAVE HER SON, 8, FROM RARE, FATAL DISEASE: ‘GUT-WRENCHING’
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.
MUSCULAR DYSTROPHY BREAKTHROUGH: FDA APPROVES FIRST-EVER GENE THERAPY FOR RARE CHILDREN’S DISEASE
“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.”
WHY ARE SOME PEOPLE COLOR BLIND? HERE’S THE SCIENCE BEHIND IT, INCLUDING HOW TO RECOGNIZE SYMPTOMS
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.
MOM PRAISES VIRAL PARENTING TACTIC AS SHE ALLOWS HER KIDS TO PLAY BY THEMSELVES: ‘WHOLE NEW WORLD’
“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.
FLORIDA STUDENT AND TEACHER BOND OVER MATCHING SCARS FROM THEIR OPEN-HEART SURGERIES: ‘TOUGH COOKIES’
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.
CLICK HERE TO SIGN UP FOR OUR HEALTH NEWSLETTER
“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.
Use left and right arrow keys to navigate between menu items.
Use escape to exit the menu.
Sign Up
Create a free account to access exclusive content, play games, solve puzzles, test your pop-culture knowledge and receive special offers.
Already have an account? Login
Health
Possible hantavirus case under investigation in upstate New York; no connection to deadly cruise ship outbreak
NEWYou can now listen to Fox News articles!
A “suspected” hantavirus case in upstate New York is being investigated, according to the Ontario County Public Health Department (OCPHD) based in Canandaigua.
The department announced in a Facebook post Thursday that it is currently “investigating a suspected locally acquired hantavirus case.”
“There is NO connection to the cruise ship outbreak, and there is no risk to the general public,” OCPHD officials wrote.
The investigation comes as global health officials continue monitoring a rare hantavirus outbreak tied to the MV Hondius luxury cruise ship that has sickened multiple passengers and crew members and left three people dead.
AMERICAN EVACUATED FROM CRUISE SHIP TESTS POSITIVE FOR HANTAVIRUS, ANOTHER HAS SYMPTOMS, HHS CONFIRMS
As of May 13, the World Health Organization (WHO) said 11 hantavirus cases had been identified in connection with the cruise outbreak, including eight confirmed cases, two probable cases and one inconclusive case. Three deaths have also been linked to the outbreak.
Health officials have emphasized that hantavirus infections remain rare and that the risk to the general public is low.
Human-to-human transmission of hantavirus is considered extremely rare and has only been suspected in certain strains, including the Andes hantavirus strain linked to the cruise ship outbreak.
HANTAVIRUS IN THE US: WHERE THE RARE, SOMETIMES DEADLY DISEASE HAS BEEN FOUND
A passenger wearing a face mask and blue protective gown gives a thumbs up inside a bus after disembarking from the hantavirus-stricken cruise ship MV Hondius at the port of Granadilla in Tenerife, Canary Islands, Spain, on May 10. (Manu Fernandez/AP Photo)
“Hantavirus infections are rare in New York,” the OCPHD said. “The virus is spread through mouse and rodent droppings, especially when urine, feces, or nesting materials become aerosolized during cleaning.”
The OCPHD urged residents to take precautions when cleaning enclosed spaces where rodents may be present, including wearing gloves and masks when opening or cleaning attics, cabins, sheds and garages.
The OCPHD and the Centers for Disease Control and Prevention (CDC) did not immediately respond to Fox News Digital’s request for comment.
REPORTED HANTAVIRUS PROTOCOL BREACH AT HOSPITAL FORCES 12 EMPLOYEES INTO 6-WEEK QUARANTINE
A 3D illustration shows the structure of hantavirus, an RNA virus transmitted to humans through rodent excreta that can cause severe illnesses including hemorrhagic fever, renal disease and hantavirus pulmonary syndrome. (iStock)
The cruise ship outbreak has prompted heightened precautions internationally.
In the Netherlands, Radboud University Medical Center quarantined 12 staff members after officials said a hantavirus patient’s blood and urine were not handled under the strictest international protocols required for the specific virus strain.
CLICK HERE TO DOWNLOAD THE FOX NEWS APP
Hospital officials said the risk of infection to staff remained low but called the quarantine a precautionary measure.
The outbreak aboard the MV Hondius began after a Dutch cruise ship carrying 147 passengers and crew departed Argentina on April 1 for a South Atlantic voyage.
According to the WHO, investigators believe the initial infection may have stemmed from rodent exposure during birdwatching excursions before boarding the ship.
Fox News Digital’s Bonny Chu contributed to this report.
NEWYou can now listen to Fox News articles!
A common over-the-counter medication combined with a home exercise program could help ease cognitive issues for cancer patients.
That’s according to a study from the University of Rochester, which tested the effects of physical activity and low-dose ibuprofen on patients receiving chemotherapy treatment.
“Chemo brain” (also called chemotherapy-related cognitive impairment, or CRCI) is a known side effect of cancer treatment that can affect memory, concentration and multitasking ability. Up to 80% of people who receive chemo experience some degree of cognitive impairment, previous studies have shown.
BRAIN AGING MAY ACCELERATE AFTER CANCER TREATMENT, STUDY SUGGESTS
Rochester’s phase 2 trial studied 86 adult cancer patients in New York undergoing chemotherapy who were experiencing cognitive problems. The average age was 53 and nearly 89% of participants were women, according to a university press release.
Participants who took only ibuprofen also showed greater cognitive improvements than the placebo group. (IStock)
Patients were randomly assigned to one of four groups. One group participated in home exercise designed specifically for cancer patients, a second group combined the exercises with ibuprofen (200 milligrams, or one pill, twice a day), the third group took ibuprofen alone and a fourth took a placebo alone.
TWO POPULAR TYPES OF EXERCISE COULD REDUCE CANCER GROWTH, STUDY FINDS
The exercise program consisted of low to moderate-intensity activity, including progressive walking and training with resistance bands.
“This is one of the first studies specifically designed to assess these interventions for cancer-related cognitive impairment during chemotherapy in patients with multiple diseases using both performance-based cognitive assessments and patient-reported outcomes,” said lead author Michelle C. Janelsins, Ph.D., MPH, of the University of Rochester and the Wilmot Cancer Institute, in the press release.
Up to 80% of people who receive chemo experience some degree of cognitive impairment.
After six weeks, exercise was linked to the clearest improvements in attention and cognitive function, according to input from family and friends. Those in the group who combined exercise and placebo showed better attention levels compared to those who took just a placebo.
CLICK HERE FOR MORE HEALTH STORIES
Participants who took only ibuprofen also showed greater cognitive improvements than the placebo group.
The findings suggest that ibuprofen may provide some improvement in cognitive function, although the benefits appeared to be smaller and less consistent than those seen with exercise.
“Chemo brain” (also called chemotherapy-related cognitive impairment, or CRCI) is a known side effect of cancer treatment that can affect memory, concentration and multitasking ability. (iStock)
This suggests that inflammation may contribute to cancer-related cognitive impairment, and that anti-inflammatory medications could be an effective therapeutic approach.
“We are encouraged by the findings of this trial that suggest possible benefits of both interventions for some cognitive domains,” Janelsins said. “Clearly, we saw a more pronounced effect with exercise, which is notable considering the multiple health benefits of exercise for cancer survivors.”
CLICK HERE TO SIGN UP FOR OUR HEALTH NEWSLETTER
No adverse side effects were reported during the trial.
The findings were published in Cancer, the peer-reviewed journal of the American Cancer Society.
CLICK HERE TO DOWNLOAD THE FOX NEWS APP
There were some limitations of the study, the researchers noted, including the small sample size and short duration. The effects were also not consistent across every measure of cognitive function.
As the majority of participants were women, the findings may not be generalized to broader populations.
“Clearly, we saw a more pronounced effect with exercise, which is notable considering the multiple health benefits of exercise for cancer survivors,” the researcher said. (iStock)
Researchers are planning larger phase 3 trials to confirm whether ibuprofen and exercise can effectively improve chemo-related cognitive impairment.
“Since we saw cognitive benefits in some domains and not others, we will also consider additional doses and longer durations in future research trials,” said Janelsins.
TEST YOURSELF WITH OUR LATEST LIFESTYLE QUIZ
Investigators emphasized that patients should speak with their oncology team before starting ibuprofen or exercise interventions during chemotherapy, as certain treatments or medical conditions could increase the risk of side effects and complications.
-
Detroit, MI8 minutes agoHow many division wins will the Detroit Lions tally in 2026?
-
San Francisco, CA20 minutes agoSF’s economy may be at an “inflection point”
-
Dallas, TX26 minutes agoDallas Cowboys schedule wallpapers: Mobile and desktop versions available
-
Miami, FL32 minutes ago18-year-old man from NW Miami-Dade found safe, detectives say – WSVN 7News | Miami News, Weather, Sports | Fort Lauderdale
-
Boston, MA38 minutes agoMan hospitalized after slashing at Nubian Square MBTA Station – Boston News, Weather, Sports | WHDH 7News
-
Denver, CO44 minutes agoBroncos will travel 19,129 miles in 2026 (see where that ranks in the NFL)
-
Seattle, WA50 minutes agoSeattle Mariners reveal plan for next turn through rotation
-
San Diego, CA56 minutes agoWhere to watch San Diego Padres vs Seattle Mariners: TV channel, start time, streaming for May 16