- Grayson Naff was diagnosed with rare Batten disease last year
- “This is what heartbreak is. The pain is indescribable,” his mother said
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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 last year with Batten disease: a group of rare genetic disorders 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 indescribable. There are times when I have trouble breathing because of this nightmare.”
Batten disease affects about one in 25,000 babies and eventually patients lose the ability to speak, move, see and swallow. They usually live only five years after symptoms begin.
Grayson’s eyesight has already deteriorated to the point that he is considered legally blind, meaning he already has difficulty with daily activities such as playing, reading and writing.
Grayson, 8, with his mother Emily Blackburn
Grayson with his mother, her husband, Chris Naff, and his younger brother Beckett. Siblings of affected children have a one-in-four chance of also developing the disease, and a 50 percent chance of being carriers, according to Boston’s Children’s Hospital.
“If there is no approved treatment/cure in the coming years, Grayson will lose every function he has now, the first of which is complete blindness,” his mother said.
Grayson recently started training with a white cane, a mobility aid for the blind and visually impaired.
It involves walking with a stick that scrapes the ground as the person walks, allowing the individual to detect obstacles in their environment.
At best he can see about five to four inches in front of him, Ms. Blackburn said Fox news.
“Accepting that my son is legally blind — and that if he follows the typical path of Batten disease, he will likely lose all his vision — is heartbreaking,” she said.
Grayson’s health problems started in late August 2022 when he stood 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 could be Stargardt’s disease, a rare genetic eye disease that causes vision loss in children.
But after genetic testing to confirm the diagnosis, doctors realized he did indeed have 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 carriers, according to Boston’s Children’s Hospital.
Grayson is taking Miglustat, a drug that it is hoped can ease or slow the symptoms.
But the drug has not yet been approved by the FDA for Batten disease, meaning that if insurance doesn’t cover it, the drug will cost the family about $100 per pill, or $9,000 per month.
Grayson has also started learning Braille, which allows blind people to read by feeling a pattern of raised dots.
At school he has a scribe who writes down what the boy says. A portable desktop magnification device that increases and changes contrast also helps him read his papers at school.