09/25/2026
Today is D Day. If you’re new here, that means Diagnosis Day. Sep 25, 2020 I got a phone call where a woman told me my then 5-year-old brilliant boy who recently started bumping into things, so we just wanted to see about glasses was actually going to die around 16-20 years old. Oh, but wait! First he will lose his vision, suffer terrible seizures and dementia, and lose all abilities: walking, talking, swallowing. He will spend his shortened life declining mentally and physically. He will weaken to the point of requiring a wheelchair and then become bedridden.
That’s hard to read, I know. Especially when written so frankly. But I spend 362 days a year, give or take, sharing the nice version, because that’s typically where I try to keep my focus. I do believe it is important to focus on the good so the bad doesn’t overtake you. Even writing this makes me cry and I try not to let myself cry because I have a lot of kids that need me to man up and be here. But if I don’t share the reality, I am failing the Batten community and my son. The world cannot fight for something they know nothing of, so I have to share the facts.
Daxx is now 11. He looks very different than he used to. Unwell. He has lost a lot of strength, mentally and physically. He is falling well behind his peers and only chugging along thanks to the incredible crutches we know as Ms. Kate and Ms. Tara, his TVI and para, the biggest blessings in this nightmare. He struggles with forgetting his thoughts and with finding the words to share his thoughts, often just giving up. Recently his speech has become more slurred so even when he has the words, it’s too hard to understand. His mood and behavior are pretty atrocious at times thanks to the aggression caused by dementia.
Daxx’s disease, Juvenile Batten disease, is genetic. Mom and Dad are unknowingly carriers and can either have unaffected children, a child who is an unaffected carrier, or an affected child. There is nothing you can do to prevent it, nothing we did caused it, and nothing can be done…yet…to cure it. Yet is the key word here. I try to raise awareness and build up our “Team Daxx” army so hopefully there’s a cure someday. But even that is hard. I can’t seem to make people care. Yes, we have a few AMAZING people on our side! A few Team Daxx window decals riding around town. I asked Culvers if we could have a fundraising night once and they have been riding HARD for us ever since! I approached one other local business and when the owner told me to my face that my son is possessed by a demon because of the sins of our ancestors, I quit. One other business, Mutch 2 Do, offered to put a large Team Daxx decal on their trailer. The supporters may be few, but they mean the world!
What can you do? Every purchase through Cl3an Freak raises money for Batten disease research and supporting affected families. Every tshirt you wear is an opportunity to inform people, whether that’s a Cl3an Freak shirt, White Cane Day, Yulee Hornets braille shirt, etc. If I make it, it spreads a message. You can join our annual 5k, held right around Batten Disease Awareness Day in late May, early June. You can donate to me, Rare Sisters and BDSRA. Own a business? Consider being Team Daxx. Whether that’s through financial donations, posting to spread awareness to people I may not be able to reach, or decorating your business windows like Culvers did. Maybe you have an event that you could donate a portion of the funds to the cause? I don’t know what this looks like because I’m just a mom, but I do know there are amazing people in this world and there are children suffering and people need to know and care about it. I can see the viewers of my posts. They’re seen, they’re just not shared. If you share, you helped. If you invite people to follow my page, you helped. Your word of mouth helps…and these kids so badly need your help. Just imagine if it was your kid. You would hope people cared.
Time to push it all down again for another 362 days. ✌🏼
