Briggs & Brody’s battle with Batten Disease CLN2

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Briggs & Brody’s battle with Batten Disease CLN2 Determined to find a cure for Batten Disease CLN2. Help us spread awareness and fight for a cure! ❤️‍🩹 Follow our story as we navigate our new ‘normal’.
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Dentist this afternoon, and we closed it down 😅😭🥵. Brody thought we were at school & wouldn’t take any other answer/rea...
08/01/2026

Dentist this afternoon, and we closed it down 😅😭🥵. Brody thought we were at school & wouldn’t take any other answer/reasoning. I love that they still took his love & gave it back.

This was Baylors first visit, and thank gosh Brandon was able to meet me there bc I wouldn’t have survived. Brody has to be strapped down, and I’m assuming they weren’t sure how Briggs would react/light sensitivity’s. They went first, and they called the other 2 back about 5 mins after.

Absolutely no way I could’ve been there for everyone 😭 still left crying 😭👍🏼

Now, off to Columbus. Hopefully we’re in bed by midnight 😭😮‍💨 keep praying y’all. I need something to give.

I always yap about taking the pictures. Here’s some recent ones that I haven’t shared. ❤️ Always take the picture. The v...
07/01/2026

I always yap about taking the pictures. Here’s some recent ones that I haven’t shared. ❤️

Always take the picture. The video. Those tiny voices. Those little moments. Try to catch them, while enjoying them. That might be what will get you through when that’s all you have left. ❤️‍🩹

07/01/2026

Payton had a reading test at a local school this morning. I had to wake Baylor and Briggs up for it 🤪

Jammed out in our Jammie’s this morning. The boys have no school on Wednesdays, so we get to take it easy.

It also took me longer to change diapers, put them all in the car, and strap them in than the time it took her testing 🤪😅🥵

*we do not own the rights to this song*

Brody ➡️ Baylor. Same age. He aged overnight. He’s talking, doing new things everyday, doing “big kid” things, etc. I re...
07/01/2026

Brody ➡️ Baylor. Same age.

He aged overnight. He’s talking, doing new things everyday, doing “big kid” things, etc. I remember this age SO well with Brody. His tiny voice. The little please and thank you’s. Even down to the blueberry eatin’! Brody used to get down with some fruit.

It just hits you. In so many soft, but brutal ways. Harsh, and then a little peck. I watch them sleep, take pictures, and smile. Then, reminisce on the pictures I just took. Sometimes continuing to smile, other times spiraling and crying in agony.

Gosh dang. 💔😭

Welllll. I’d say school wore him out today😅🤣
06/01/2026

Welllll. I’d say school wore him out today😅🤣

06/01/2026

Not what you’d typically see a 5yr old boy playing with.

Since he no longer has vision, he can’t even play on his own anymore 😭 he can’t find his cars to retrieve them off the ramp. He can’t find the button here on Ms. Rachel to continue playing her songs. He gets very frustrated, very quickly when feeling for his items and he doesn’t find them in seconds. He is so beautiful in all his own ways, but it shouldn’t be like this 😭💔😭 I want to outlive him. 😭💔😭💔

06/01/2026

If my disability advocacy feels “too loud or too much,” imagine living it.

I said it last year and I’ll say it again. I will always be a voice for those who can’t be heard. I may not always be the loudest voice in the room, but I will always be a voice. Silence was never an option.

This year, my focus is intentional. I’m choosing to spend my time on things that give me purpose and fuel my drive.

That means stepping deeper into advocacy and service by joining the Undiagnosed Diseases Network Foundation and serving on three councils: the Fundraising Council, the Action Council, and the Engagement Council.

This work matters. Our families matter.

Off Christmas break, but only back to school for today. We have a full week of appointments unfortunately, but looking f...
06/01/2026

Off Christmas break, but only back to school for today. We have a full week of appointments unfortunately, but looking forward to a full week next week!

Brody gets all his therapies at school right now, and I love keeping his body on the same schedule. I hope they’re having the best day! We cannot wait to pick them up! ❤️❤️❤️

It’s the last day of Christmas break, so of course we stayed in Jammie’s for the day 🤪Those random car naps he takes, I ...
06/01/2026

It’s the last day of Christmas break, so of course we stayed in Jammie’s for the day 🤪

Those random car naps he takes, I love looking at how peaceful he is. He doesn’t have to worry about pain, or being scared bc he doesn’t know where he is. He’s so dang cute 😭🥹🥰😍

Brody’s been yanking his monitor off, and jumping in our bed the last few mornings. He invited Quinn with him and I toda...
05/01/2026

Brody’s been yanking his monitor off, and jumping in our bed the last few mornings. He invited Quinn with him and I today 😉🤣🫶🏽

The little things. The quiet & slow snuggles. Just us. 🥺❤️😭

The most heartwarming pic! Brody NEVER naps. Usually he’s sick if he is. This is only the second time Brody and Nick hav...
03/01/2026

The most heartwarming pic! Brody NEVER naps. Usually he’s sick if he is. This is only the second time Brody and Nick have met, but it shows just how comfortable he was.

He rubbed his ear, and hummed his way to sleep as Nick rocked him in the chair.😫🥺🤣 He was so calm, and at peace. It was just another testimony IMO.

Lizzie and her husband Nick came over to pray with us/over us, and just be an ear again today. It’s a safe place for us, a refreshing moment. Thankful for these gentle reminders sent right to us. 😭🥺❤️

03/01/2026

Brody and Quinn. 😭❤️ the bond they’ve grown is so special 😭 I love their love for one another. Brody gets up and asks for “dog” even though she’s right there in his bed. “Dog” is everything to him 😭❤️❤️

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