Emily Blackburn is sharing her family’s most sacred secret in the hopes of extending her son’s life.
After noticing that her little boy, Grayson Naff, was standing strangely close to the television in August 2022, Blackburn, 33, took the tot to an ophthalmologist.
She’d hoped the issue would be an easy fix.
But the mom of two from Tipp City, Ohio was unexpectedly “shaken” to her core in March 2023, after learning that then 7-year-old Grayson was stricken with Batten Disease — an ultra-rare fatal condition which prompts dementia-like symptoms in children.
“If there is no approved treatment [or] cure in the coming years Grayson will lose every function he has now, the first being full blindness,” Blackburn penned in a gut-wrenching Facebook reveal.
“This is what heartbreak is. The pain is beyond words,” she said. “There are times I have trouble breathing through this nightmare.”
Batten disease is an inherited genetic disorder in which the brain cells are missing an enzyme called tripeptidyl peptidase 1 (TPP1), which causes waste buildup in the cells’ neurons, per the Children’s Hospital of Orange County in California.
“As a result, the cells gradually lose their function and die,” say the experts. “Patients begin exhibiting symptoms with developmental delays in speech, and then progress to loss of motor skills, unsteady gait, visual impairment, seizures and eventual death.”
Worldwide, roughly 14,000 children are known to have Batten disease, according to Boston Children’s Hospital. In the US, it affects an estimated 2 to 4 out of every 100,000 kids.
The life expectancy for afflicted youngsters who begin developing symptoms of the disease between the ages of 5 to 10 is approximately ten years — meaning most die in their late teens or early twenties.
Isla Edwards, a now 10-year-old girl from Texas, was diagnosed with the disorder at age 7 in 2021. However, owing to an $18,000 monthly medication known as Miglustat, which is believed to slow the progression of Batten disease symptoms, the ailing tike is still able to swim, dance and play video games despite her vision loss.
Grayson’s deteriorating eyesight has rendered him legally blind, causing him to struggle with daily activities like playing, reading and writing.
The boy, who may ultimately become wheelchair bound, uses a walking cane for sight support and is beginning to learn Braille. At school, Grayson has a scribe who notes down what he says, and he relies on a portable desktop magnifying device that helps him read.
Blackburn grapples with her child’s grim prognosis.
“Tears don’t even give this pain justice, it is beyond words, it is a feeling so raw that my bones hurt,” she said, noting that she is an active, witty, steak-loving boy who she can’t imagine dying in his prime. “I am truly living with a broken heart.”
Like the Edwards family, Blackburn, too, hopes the costly meds — which she’ll have to purchase from an international distributor — will extend her son’s good health for as long as possible.
“But if it’s not covered through insurance it’s up to $18,000/month…,” she explained in a GoFundMe campaign seeking $90,000 in donations. “$18,000 buying it out of the country from the least expensive pharmacy.”
“I literally lose my breath thinking of that number,” added a sorrowful Blackburn. “We’ve been denied with our primary insurance, we’re onto an appeal and will be trying his secondary insurance.”
The mother ensured that all monies raised would be directly allocated to Grayson’s care.
“To date (since August 2022) we’ve been to five eye doctor visits, one low vision visit, four genetic tests, four genetic counseling appointments and a trip 500+ miles away to lowa,” she said. “A trip we’ll need to make twice a year.
“We still have a journey ahead of us and we need your help.”
Blackburn is also requesting that kindhearted friends, family members and strangers help keep Grayson in good spirits as the boy is unaware of the gravity of his disorder.
“Right now Grayson understands that everyone is loving and caring for him because of his vision loss,” she explained. “We have not used the disease name, only vision loss.”
“We’d like to keep it like that.”
Kristian Tucker, a married mom of three from Spokane, Wash. — whose two sons Michael, 6, and Oliver, 2, have both been diagnosed with Batten disease — is also keeping her brood in the dark about their condition.
“How do you explain to a child that they have limited time?” she questioned. “We’re putting it off for as long as possible.”
Blackburn hopes folks flood her son with faith rather than fear.
“Instead of talking about [Batten disease] with Grayson, when you see him give him an extra high five or hug,” she urged. “He loves when people care for him.”
