Ohio mom reveals ‘heartbreak’ after son was diagnosed with DEMENTIA at age EIGHT – as she shared the subtle symptom that led to the ‘nightmare diagnosis’

An Ohio mother has revealed her ‘heartbreak’ after her eight-year-old son was diagnosed with a rare disease that will lead to childhood dementia.

Grayson Naff was diagnosed with Batten disease last year – a group of rare genetic conditions that cause the brain to gradually shut down over five to 10 years.

His mother, Emily Blackburn, from Tipp City, said: ‘This is what heartbreak is. The pain is beyond words. There are times when I struggle to breathe through this nightmare.’

Batten’s disease affects about one in 25,000 babies, and eventually sufferers lose the ability to speak, move, see and swallow. They usually only live for five years after symptoms begin.

Grayson’s vision has already deteriorated to the point where he is considered legally blind, meaning he already struggles with daily activities such as playing, reading and writing difficult.

“If there is no approved treatment/cure in the coming years, Grayson will lose every function he has now, the first being complete blindness,” his mother said.

Grayson has recently started training with a white cane – a mobility aid for the visually impaired.

It involves walking with a cane which scrapes along the ground as the person walks, allowing the person to detect obstacles in their surroundings.

At best, he can see about five to 10 centimeters in front of him, Ms Blackburn said Fox News.

“Accepting that my son is legally blind — and that if he goes the typical path of Batten disease, he will likely lose all of his vision — is heartbreaking,” she said.

Grayson’s health problems began in late August 2022 when he started standing close to the TV to watch it.

His mother took him to an ophthalmologist, who noticed a problem in the boy’s retina and referred him to a specialist at the Cincinnati Eye Institute.

The specialist thought it might be Stargardt disease, a rare genetic eye disease that causes vision loss in childhood.

But after genetic testing to confirm the diagnosis, doctors realized he actually had Batten disease.

It is passed down through families and is caused by a genetic mutation. There is no cure for the disease.

Because Batten disease is recessive, children must have two copies of a mutation—one from each parent—to be affected.

Siblings of affected children have a one in four chance of also developing the disease and a 50 percent chance of being a carrier, according to Boston’s Children’s Hospital.

Grayson is taking Miglustat, a drug that is hoped to ease or slow the symptoms.

But the drug is not yet FDA-approved for Batten disease, meaning that if insurance doesn’t cover it, the drug will cost the family about $100 a day. pill or $9,000 each month.

Grayson has also begun to learn Braille, which allows the blind to read by feeling a pattern of raised dots.

At school he has a scribe who notes what the boy says. A portable desk magnifier, which magnifies and changes contrast, also helps him read his papers at school.