Grayson loves being outside. His mom shared photos on Facebook this month of him roasting a hot dog in a fire pit, throwing rocks in a creek and racing around a track with his friends. He likes to color and hosted his first art show for family members this spring. He recently participated in a play, “Gunpowder Tunafish,” at school. Days earlier, thanks to the WACO Historical Society in Troy, Grayson got to ride in an open cockpit in a biplane.
“My heart feels full today!” Blackburn wrote on Facebook.
In most ways, Grayson is a normal 7-year-old. He doesn’t yet quite understand what makes him different. His mom is getting used to that herself. Blackburn doesn’t know when or how she’ll break the news to Grayson, but she has kept family and friends updated on her son’s health issues on social media.
Emily wrote this heartbreaking post on Facebook on May 12, while tagging her husband Bradley Blackburn and Grayson’s dad Chris Naff.
“I write this with trembling hands, a racing heart, and tears down my face. We thought Grayson’s vision loss was from Stargardt Disease. After rounds and rounds of genetic testing, we found it was much much more than that. At the end of March, Grayson was diagnosed with a rare, fatal, neurological disease, called CLN3 Batten Disease. We received more results this month solidifying it. The life expectancy of this terrible disease is late teens, early 20s. If there is no approved treatment/cure in the coming years Grayson will lose every function he has now, the first being full blindness.
“This is what heartbreak is. The pain is beyond words. There are times I have trouble breathing through this nightmare.
“I know once I hit send, this becomes real, it’s not our secret anymore. I’m doing this for Grayson, he deserves all the love and support. His body needs help.
“Please consider donating to help us get Grayson into the best doctors and the best medication available. With things moving in this field, scientists, doctors and researchers are trying their hardest. We can’t give up.
“I simply cannot imagine a life without Grayson.
“Please make sure if talking to children about Grayson they don’t know the hard information. Right now Grayson understands that everyone is loving and caring for him because of his vision loss, we have not used the disease name, only vision loss. We’d like to keep it like that.
“We thank you for your love and support you’ve shown Grayson since he’s been having issues and we thank you so much for prayers, donations, and sharing his story. He needs us.”
Grayson’s health problems started last August when he was taken to an ophthalmologist. Blackburn said her son was standing close to the TV when he watched it. She wondered if he needed glasses.
During the exam, the doctor noticed the different lenses weren’t helping Grayson. The doctor then checked his retina and noticed an issue, recommending Grayson see a specialist at the Cincinnati Eye Institute. The specialist suspected Stargardt Disease, which robs a person of their central vision, making them legally blind.
“That felt like the end of the world,” Blackburn said. “He was like, ‘Let’s get some genetic testing just to make sure that it is Stargardt’s.’ He did mention, ‘There’s this other really scary disease, but your son’s not having seizures. He seems to be fine, but we just want to rule that out, too.”
Three months later, the family received the results of the genetic tests. He tested negative for Stargardt Disease and was found to be a carrier of CLN3 Batten Disease, which meant he could pass it on to his kin. The doctors couldn’t explain the vision loss, so they wanted to do more testing. In March, they discovered something they missed and diagnosed him with Batten Disease.
According to BeyondBatten.org, the disease is “one of a group of disorders known as neuronal ceroid lipofuscinoses (NCLs). Over 400 different errors (mutations) in 13 segments of DNA (genes) have been attributed to various forms of Batten, which differ from one another primarily by when symptoms first appear. These disorders all affect the nervous system with increasing seizures, movement disorders, altered thought processes, and cognitive decline.”
Batten Disease affects 2-4 out of every 100,000 children in the United States, according to Boston Children’s Hospital.
Blackburn did not go public with the diagnosis right away. She revealed it on Facebook and also through a website she started to keep people updated on Grayson’s health and to raise money for his health care.
“Tears don’t even give this pain justice, it is beyond words, it is a feeling so raw that my bones hurt,” Blackburn wrote on GuidingGrayson.com. “I am truly living with a broken heart. Our family has hidden this well since finding out a couple months ago. This goes to show that you never know what someone is going through. We didn’t know for 7.5 years what Grayson was going through. This young boy was born brave.”
There is no cure for Batten Disease, though as Blackburn wrote on the website, an off-label drug for a different disease has shown promise for slowing down Batten Disease. It costs $18,000 a month if it’s not covered by insurance.
“I literally lose my breath thinking of that number,” Blackburn wrote. “We’ve been denied with our primary insurance. We’re onto an appeal and will be trying his secondary insurance.”
The tentative plan is for Grayson to be on the drug for two or three years and then perhaps undergo gene therapy. There is a team working on gene therapy related to Batten Disease.
As of Tuesday, a GoFundMe.com campaign for Grayson had raised more than $32,000 from 480 contributors in 18 days. The goal is $50,000.
“The support from our community has just been overwhelming,” Blackburn said, “and we cannot thank them enough.”
Emily has not told Grayson about his diagnosis. He knows he has vision problems. He thinks he’s famous because people are wearing wristbands that read, “Guiding Grayson” and “Born brave.”
“It’s a slippery slope because we’ve gone out in full detail on Facebook and other places,” Emily said. “He can’t quite read yet. We’re trying to just protect him and keep him safe while sharing our full story. So it’s hard. We just don’t really plan on scaring him and telling him these things. We don’t really have a game plan. We’ll just take as long as we can.”
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