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Guiding Grayson: a family’s fight to advocate, educate and save their son, Grayson, from CLN3 Batten Disease

Written by Emily Naff

It all started with a simple eye exam. Grayson was entering into the first grade, and we thought he may need glasses—what a perfect time then, right before the new school year, to get him all set. After Grayson failed the eye exam and his vision didn’t get any clearer with lenses, the optometrist looked at photos of the back of his retina. She saw something that was concerning and referred us to a retina specialist.

What did this mean? Did this mean our son’s vision would require surgery, something glasses couldn’t help? Surely there had to be a solution. When we saw the specialist a few weeks later, he thought Grayson may have Stargardt Disease, a disease that affects the central vision, meaning Grayson would likely be legally blind in the next 5 to 10 years. The shock of this disease sent us into a spiral.

He suggested genetic testing to verify the diagnosis, and the tests came back a few months later. The results came back negative for Stargardt but there were concerning findings of a different disease, a fatal disease called Batten disease. Our specialist pushed for further testing. He wanted a definite answer for us, for Grayson, as to whether he was affected by the disease or a carrier.

Three long and agonizing months went by, three months of pure torture pondering if our son had this deadly disease that would, depending on how he was affected and the order of symptoms, first leave him completely blind, and then give him seizures, next behaviour issues and loss of mobility, and then childhood dementia.1 A disease that would reduce his life expectancy to his late teens or early twenties. We panicked. 

We panicked even more when I sat down on a video chat with the geneticists who, painfully and with tears in their eyes, told me Grayson was affected: he has CLN3 Batten disease. A genetic disease that he was born with, with symptoms showing up now, at 7 years old. CLN3 Batten Disease is caused by changes (mutations) of the CLN3 gene and is inherited as an autosomal recessive trait.2

Our entire world completely changed—it changed that instant. The pain of hearing your child has an incurable disease that would take every bit of him in the coming years is something I can’t describe in words. It’s absolutely soul-crushing. It’s everything you never want to happen. It’s raw and body-aching. It’s a definition of true heartbreak.

There was one thing I knew and that was the love I have for Grayson—a love so strong I would move glaciers for him, so we got to work. We researched as hard as we could, made as many connections as possible through emails and phone calls, and went into a mode so powerful that sleep wasn’t an option.

Within two weeks we were on a road trip, eight hours away, seeing a genetic ophthalmologist; we were going to do what we could to save Grayson’s vision first. Grayson is already legally blind. It’s unknown how long he will have his vision, but knowing we are doing everything we can for him, allows us to keep breathing.

Next, we flew states away to a neurologist. We talked to researchers and we shared his genetic results with anyone who could tell us anything new. We emailed, we left messages, we called and called, and we learned and became educated on this disease. We learned so that we could advocate, we wanted to support Grayson as much as we could. We also wanted hope. We found hope in the many doctors we visited and learning about clinical trials. We learned about gene therapy and that we can’t give up hope. We simply can’t.

We found support through our community. We found support through strangers. We leaned on them, and they showed up for our family. Donating funds to help us travel to doctors across the country and to help us pay for medication. Lemonade stands and Guiding Grayson T-shirts swarmed throughout our small town. This is support our family will never forget, to Guide Grayson through his fight, for a little boy who is so brave.

Grayson’s life and the life of the other children affected by this disease are so important. These are children that are smart, funny, creative, loving, these are children that don’t deserve to have their life taken piece by piece until they aren’t them anymore. There is still time and hope.

To learn more or follow Grayson’s personal journey please visit his website: Our hope is to continue to give Grayson the best life possible, with the most amazing experiences and support given to him by his community, family and strangers.

To learn more about Batten Disease and ongoing research efforts, please go to:https://bdsrafoundation.organd

Thank you to the doctors, researchers and scientists who are working tirelessly to find the cure for children affected by Batten Disease.

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