2025 Batten Disease Awareness Day

THANK YOU! Thank you for being here! Thank you for being on my site and taking time out of your day to read this blog and learn more about Daxx!

It’s possible you’re here because you’re a Cl3an Freak customer, and that’s ok! I want everyone to follow Daxx’s journey and learn about Batten disease. My main goal in writing this, however, is so participants of our 5k can come here to hear the story rather than have to witness me lose my cool in front of them at the event. I get worse at those speeches every year, plus it’s too heavy for little ears. That being said, please be careful to not let your kids know the ugly truths so it never gets back to Daxx.

If you’re new here, here’s Daxx’s story:

He was completely “normal.” He was actually quite literally a genius. When he was 3 or 4 he started holding things up to his face and standing right up against the tv. We didn’t really think anything of it. At 5 he was slamming into us…like how do you not see my 6 foot body?! I took him to the eye doctor, where they gave him glasses. I called back in 2 weeks saying they weren’t helping. They said it takes time to adjust. I called again, so they brought him back in and the doc saw something that she hadn’t before. She didn’t explain, she just sent us to a specialist. They did some exams and when the doc came in the room, she told me it's Retinitis Pigmentosa, and I need to start teaching him braille. Umm excuse me?!

Retinitis Pigmentosa is where their vision is like seeing through a keyhole. Everything is black but the small area of sight. They tried to draw blood for genetic testing but he flipped out, so they brought him back to do it under sedation, along with an ERG (electroretinogram) to know more.

I got a call maybe a month later. The person on the phone told me it’s Juvenile Batten disease or CLN3, it’s genetic, and he will live to approximately 16-20 years old. Just like that, over the phone.

That was the day before he started Kindergarten, so the school had to work QUICKLY to get him an aide and services and they did. He had a 1-1 aide the next morning.

We also had military orders to GA. They cancelled those orders because of his diagnosis and sent us here because of the hospitals and because I’m from Jax, so we have family support. We moved here 2 months later.

Most people know him as blind, but that’s just the first thing to go with his type of Batten disease. These children also have childhood dementia, which has started in Daxx. They see it in his MRI and it’s evident in his daily life. Seizures come next, and it could be any time now. He will lose his ability to talk, walk, swallow…all of it. These kids become bedridden until they…well...you know.

His older siblings know the reality, but not Vaughan, his little brother. That’s too heavy for a little kid. Daxx doesn’t know either. He only knows his brain is sick, that Batten made him blind, and that we are fighting for a cure. I have showered him with confidence though, so he’s convinced he’s famous, and that’s ok! Whatever it takes for him to not feel bad!

Within the last year he started getting bad anxiety, crying, saying he wishes he was normal. We know he’s anxious when we see him rub his eyes. That’s his nervous tick or “tell”.

When he was 5 he laid in bed crying, saying he wished he could go to Heaven so his eyes could work again.

This disease is cruel and merciless. There is no treatment and no cure, just wishes and hopes and fundraisers. When I say I couldn’t do this without you, I mean that quite literally. At the time of this post, we are the #2 fundraising team for this event, which is the biggest push of the year to raise money for researching a cure. We have raised $2700 and counting. I’m so grateful for you all!

2 years ago I started a small business selling tallow skin and hair products. I named it Cl3an Freak, a nod to CLN3, his form of Batten disease. I donate a portion of every sale to the Batten Disease Support and Research Association (BDSRA), a non-profit working to provide support and research toward a cure. To date, we have raised $7800! We were also able to raise $1500 toward the Nassau County School District’s vision department. I could NEVER do this myself! This is all thanks to your support and generosity. So, whether you bought my tallow or my t-shirts or simply donated, you’re the coal in this little engine that could!

2025 5K MVP

I like to recognize an MVP of our 5k. This person is recognized because they were a key player in Daxx’s year.

It’s the end of the school year. Daxx’s 4th grade year. The military sent us here in 2020, right after Daxx was diagnosed, right after he started Kindergarten. They sent us here so we’d have access to better medical care, but little did we know we’d also get the best school with the best friends.

Being military, my kids have never been anywhere long enough to create life-long friendships. Witnessing my children grow with the same kids has been incredible. Daxx has been blessed with the friendship of a few special boys, but one in particular has left its mark.

His name is Jaydin. He explains and describes things to Daxx. He chooses to forgo his recess to play something that Daxx likes or can play outside. These games aren’t always fun for others, but his friends are kind. One day I got a picture of Daxx and Jaydin holding hands, and the caption was “Will you help me play?” Gosh, it was the sweetest! They shared special picnic table lunches and vision lab recesses. One year, I believe it was 2nd grade, Jaydin was student of the week so he had to fill out an “About Me” paper. When asked what he wanted to be when he grew up, he answered “Teacher of the Blind.” I believe these tiny friendships will leave their mark on these future men.

Daxx will be remaining in 4th grade next year. His sweet friends will be moving on without him. Friendships are getting harder as Batten disease and the dementia it causes do their damage on Daxx. I hope and pray the next group of kids coming up is as kind and supportive as these boys were. I hope these boys will always remember him and if they see him in the halls or in the community, even when he isn’t the way they remember him, that they’ll stop and give him a hug. He’s a hugger.

While Jaydin is this year’s MVP, know that if you’ve read this far, you too are an MVP! Please continue this journey with us. Follow us on FB & IG @cl3anfreak #DaxxDeserves, share posts and wear the t-shirts to raise awareness, support Cl3an Freak, and continue to donate. Thank you!!