Born Brave: Tipp City first grader battling a rare genetic disease

Emily wrote this heartbreaking post on Facebook on May 12, while tagging her husband Bradley Blackburn and Grayson’s father Chris Naff.

I write this with shaking hands, a pounding heart, and tears on my face. We thought Grayson’s loss of vision was due to Stargardt’s disease. After rounds and rounds of genetic testing, we found it was so much more. In late March, Grayson was diagnosed with a rare, fatal neurological disease, called CLN3 Batten disease. We received more results this month by consolidating it. The life expectancy of this terrible disease is in the late teens, early 20s. If there is no approved treatment/cure in the next few years, Grayson will lose all the functions he has now, the first being total blindness.

That’s what heartbreak is. The pain is beyond words. There are times when I have a hard time breathing through this nightmare.

I know once you hit enter, 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 some help.

Please consider donating to help us get Grayson on board with the best doctors and best drugs available. With things moving in this field, scientists, doctors and researchers are doing their best. We cannot give up.

I simply can’t imagine a life without Grayson.

Please make sure that if you talk to the kids about Grayson they don’t know the factual information. Right now Grayson understands that everyone loves and cares for him because of his vision loss, we didn’t use the name of the disease, just vision loss. We’d like to keep it that way.

We thank you for the love and support you have shown Grayson since he has been in trouble, and we thank you so much for your 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 his son was standing by the TV when he watched it. He wondered if he needed glasses.

During the exam, the doctor noticed that the different lenses weren’t helping Grayson. The doctor then checked his retina and noted a problem, recommending Grayson see a specialist at the Cincinnati Eye Institute. The specialist suspected Stargardt’s disease, which deprives a person of their central vision, making them legally blind.

It felt like the end of the world, Blackburn said. He was like, Let’s do some genetic testing just to make sure it’s Stargardts. He said, “There’s this other really scary disease, but your kids don’t have seizures.” He appears to be fine, but we want to rule that out as well.

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 Batten disease CLN3, which meant he could pass it on to his relatives. Doctors couldn’t explain the vision loss, so they wanted to run more tests. In March, they discovered something he was missing and diagnosed him with Batten disease.

According to BeyondBatten.org, the disease is one of a group of disorders known as neuronal ceroid lipofuscinoses (NCL). More than 400 different errors (mutations) in 13 DNA segments (genes) have been attributed to various forms of Batten, which differ from each other mainly in the first onset of symptoms. These disorders all affect the nervous system with increasing seizures, movement disorders, impaired thought processes, and cognitive decline.

Batten disease affects 2 to 4 of every 100,000 children in the United States, according to Boston Childrens Hospital.

Blackburn did not make the diagnosis public right away. She revealed it on Facebook and also through a website she started keeping people updated on Grayson’s health and raising money for his health care.

Tears don’t do this pain justice, it’s beyond words, it’s a feeling so raw my bones ache, Blackburn wrote on GuidingGrayson.com. I truly live with a broken heart. Our family has been hiding it well since they discovered it a couple of months ago. This goes to show that you never know what someone is going through. For 7 1/2 years we didn’t know what Grayson was going through. This boy was born brave.

There is no cure for Batten disease, although, 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 about that number, wrote Blackburn. We were denied with our primary insurance. We are on appeal and will be seeking his secondary insurance.

The tentative plan is for Grayson to take the drug for two or three years and then maybe get gene therapy. There’s a team working on gene therapy related to Batten disease.

As of Tuesday, a GoFundMe.com campaign for Grayson has raised more than $32,000 from 480 contributors in 18 days. The goal is $50,000.

The support from our community has been overwhelming, Blackburn said, and we can’t thank them enough.

Emily hasn’t told Grayson about her diagnosis. She knows she has vision problems. You think you’re famous because people wear bracelets that say Guiding Grayson and Born brave.

It’s a slippery slope because we’ve been going out in full detail on Facebook and other places, Emily said. She can’t read yet. We are just trying to protect it and keep it safe as we share our full story. So it’s hard. We just really don’t intend to scare him and tell him these things. We don’t really have a game plan. Well, take as long as possible.


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