Help Grayson's Fight Against CLN3 Batten Disease

We received news that would shake our entire lives, what we thought was a vision diagnosis that Grayson could learn to live with turned into an ultra-rare fatal, inherited disease called CLN3 Batten Disease. A genetic test that we had received results for in December 2022 showed that Grayson was ONLY a carrier, not affected by this deadly disease. The doctors ordered further testing to make sure nothing was missed, for 3 long and full months I dabbled in the thought that my sweet boy had this lingering disease that would eventually kill him in 10 years, taking away every function that he has now. The life expectancy is late teens, early 20s. I cried in the shower, in the middle of the night, I cried when I would look at his work proudly displayed on the fridge, any chance my brain would wonder I would break down. In the spaces where I pushed it out, I held hope that he was only a carrier... imagine what happened once we found out it was our reality, Grayson IS affected, they had missed something. Tears don't even give this pain justice, it is beyond words, it is a feeling so raw that my bones hurt. 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. 

CLN3 Batten Disease is first led with total blindness (Grayson's vision is currently around 20/200) then slowly behavior changes, seizures, declining speech and motor skills, and near the end wheelchair-bound. These words are hard to type, they seem unbelievable. With a life expectancy of late teens, early 20’s Grayson’s life is on a countdown.

How could this happen to our vibrant, active, smart, witty 7-year-old? The boy who loves his brother fiercely, who is our spelling bee, the YouTube star Grayson. The Grayson who picks filet mignon to eat at any chance, who loves pizza and sour candy. The Gray who calls me his Queen yet chooses to go play video games with daddy whenever he can. How could this even be logical? How do I make this MAKE SENSE?!

The only way that we can move forward is with hope. There is currently no cure for CLN3 Batten Disease, but there are doctors, scientists and researchers who are working tirelessly to find an answer to treat/cure our children. There is still time. That is why we are going out of our comfort zone to ask our family, friends, community and maybe even strangers to donate to help Grayson get into the best doctors, clinics and medication. Currently there is an off-label drug (used for a different disease) that shows promise of slowing down the progression of this disease (it's in a clinical trial right now) but if it’s not covered through insurance it’s up to $9,000/month… $9,000 buying it out of the country from the least expensive pharmacy. I literally lose my breath thinking of that number.

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 Iowa. A trip we’ll need to make twice a year. We still have a journey ahead of us and we need your help. All funds will strictly be used for Grayson's care, in its own account dedicated only for his medical care. No exceptions.

I need to save my son, I need him to stay with us, but I can't do this alone. Please, please, share Grayson’s story and continue to share it.

A special note - please make sure when talking to kids about Grayson’s condition that 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, there’s no need to add any more stress to Grayson, or have something slip and he hears scary things. This is very important. Instead of talking about it with Grayson, when you see him give him an extra high five or hug - he loves when people care for him.

Our family can't thank you enough for helping to save our child. I promise you, Grayson is worth saving, a thousand times over again... he is worth it every time.

If you feel more comfortable donating to a venmo account please use @EmilyNaff12

UPDATE: Grayson's website: www.GuidingGrayson.com