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April 2024 Update

Long update on Daxx:

Those of us that interact with Daxx daily have been seeing and feeling the changes for a while now. This school year has been increasingly difficult. He’s been struggling with remembering simple things he once knew…things as simple as counting by 2s. He’s struggled to find the words to say what he’s trying to say. He’s had a lot more migraines this year, though we seem to have them largely under control now. He has new ticks you can see through his body and feel when you hold his hand. He has new facial scrunches he does that make him very insecure but said are uncontrollable. He’s been rubbing his eyes so much. This morning he told me he rubs his eyes to hide the scrunching.

The behavior is the most difficult change. He has a hard time controlling his emotions. Little things set him off, and he becomes explosive. He cries a lot. He melts down. He screams. He hits. This has been happening for some time at home, which is why he and Vaughan have their own rooms now. Vaughan deserves to have a space where he doesn’t have to be hit, choked, or screamed at. That’s so hard to watch and even say, because to Vaughan, Daxx hung the moon. Now I see Vaughan look at him, and it’s not the same. But now this behavior is also at school. It feels like it came on suddenly and strongly at school. It’s been a rough week. He's yelling at his teachers/therapists/instructors. He has had intense interactions with his Para, escalating to him swinging his cane at her a couple times. Yesterday, he even threatened her, saying “Do you want me to hit you again?” It was agreed that it was comparable to a possession. It's not him, and when he comes out of it, he's apologizing for what the demon made him do.

Him and Vaughan are no longer to walk to and from class together.

Just so many big, emotional changes.

Well, I just got his MRI results back. Nothing to explain the migraines, but he has white matter hyper intensities, or WMH. This is evidence of his decline. WMHs cause cognitive decline – in particular of information and processing speed – and lead to executive dysfunction and, ultimately, dementia. Per his Neurologist, this “does show the progressive nature and expected course for Batten.” Yes. I know what’s expected. It has lived rent free in my mind for almost 4 years now. You spend years walking toward a landmark and then act surprised when you make it there? Sounds stupid, I know. I’m not ‘surprised’, it’s that no matter how prepared I am for the arrival at the destination, I am just never prepared. I’m really good at compartmentalizing and putting on the mask (or armor) of a staff member taking care of him. I try not to handle things emotionally, and try to handle it like he’s my patient. The big changes, though…the big test results or glaringly obvious declines…those chink my armor. Knowing his poor little boy brain…that amazing brain that has always been so powerful and capable of knowing everything, creating everything…that brain is failing him and showing signs of his awful fucking disease that is going to slowly kill him.

I am sorry that you have to read that. Then again, no I’m not. This is the very harsh reality that every Batten family has to live. I could keep it to myself to spare your feelings, only to leave the suffering families to deal with on their own, but that’s not going to ever create a cure. Awareness creates a cure. So here’s your update…your awareness…that THIS is what Batten disease looks like and does to innocent, tiny children.

If you got this far, thank you. Thank you for learning. Thank you for loving my boy. Thank you to everyone who has donated to the foundation, bought a product from CL3AN FREAK which goes toward researching a cure, walked our 5K, or prayed for him. This journey would not be as tolerable without the support from the incredible people it has placed in our lives. Love ya’ll, mean it.

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5 Comments


Daxx (and you and Vaughn) are in my prayerful thoughts thru out my days. I am so very thankful that you have such an incredible support group. Thank you for these posts. I appreciate them.

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My heart breaks for you all. Knowing what to expect does not make it easier. You are in my prayers and my heart. Love to you all. ❤️

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My heart hurts for you. I love you and please know I am here if you need me for anything! 💔

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Oh my. Kristin, you and your beautiful family are always in my heart. Many hugs to you

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Always on our minds and in our hearts. I wish there were some words. We love you all

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