Briggs & Brody’s battle with Batten Disease CLN2

05/29/2026

The absolute joys of NOT having Medicaid.

Insurance is deciding that he doesn’t need this equipment, regardless of doctors letters. Why is this even a thing!!!!! 😡🤬

STOP ASSUMING BC SOMEONE HAS HEALTH INSURANCE THEY ONLY PAY WHAT YOU THINK. Even the deductible.

You can all google this “chair”. It’s easily $5k.

Yeah. I’m sorry our almost SIX year old needs a highchair and stability to safely eat on his own.

This is ridiculous. 😭😭😭

05/29/2026

Good morning! We 100% have black Stanley’s OTW, and we may get a couple more colors before the fundraiser SOON!!! Briggs and Brody’s Battle Ride

If you want to pick up there instead of shipping, we can do that too! These are ready to ship & in hand. 🫶🏽

Hats

05/28/2026

👍🏼👍🏼👍🏼

Had to toss our maxi cosi 🫠🤧😪

05/28/2026

Sorry……Well……….good thing Brandon gets paid tomorrow. We made it an entire 30 minutes…..off to a Walmart. 😭💔😤😭

05/28/2026

Infusion Thursday. 💉

Some of the “invisible” parts that y’all don’t see or may think happens just movies. I have suffered from migraines my entire life, and after having Baylor they significantly got better. No idea how or why, but I’m here for it!

Today, I woke up with a migraine. I’m always saying time doesn’t stop, but esp when you have medically fragile children. You HAVE to go. You HAVE to be there. You HAVE to do it. Same as things they need. You HAVE to get them. You have to get the bill. You have to get the special food. Everything that you wouldn’t typically need for a 6yr old, but would for a toddler. Except everything is bigger/more.

It’s no surprise I’ve been stressed, and 99% of it is financial. (Even if “everything will be ok”)I haven’t been sleeping well this week, and knew when Brandon woke me up this morning I had one. He got everyone dressed, and we walked across the street to check in by 7AM.

We got upstairs and I was having hot flashes every few seconds. I took meds before we left our room for quickest relief. We got up to the 4th floor and check in to wait for them to grab us. I really thought I was going to pass out. I remember looking at Brandon and telling him I didn’t feel good. I got up and tried to walk around, or “walk it off” because I had never felt like that prior.

I was giving myself a panic attack trying to get myself to calm down. I wasn’t moving as fast as my mind thought I was, I open the only bathroom they have in the waiting area and get sick all over the floor. I couldn’t even make it all the way in.

I was mortified. I couldn’t even gown up for Briggs to get his port accessed because the noise and light were intensifying everything. All at 7 in the freaking morning. 😭

I napped after Briggs was set up & recovered with a hospital grilled cheese 😭😂 not only the mental load, but my physical load is so large it seems I can never actually hold my head above water. Living with anticipatory grief while trying to manage the space we’re in now is the hardest thing to battle. ON TOP everyday life.

Today was hard. Now we pack up & take the 3hr drive home. Tomorrow, please be better to me. 🙏🏼😭🫶🏽

05/23/2026

What seems like no big deal to most, Briggs is RUNNING at age THREE. Brody couldn’t run anymore by this age 😭 he was more hoping/skipping & by 4, he was nearly blind & unsteady/trembly.

Brineura, even though I am constantly stressing about money/bills/bill collectors calling daily…..this is a true example of quick intervention. Briggs received his first infusion the same month he turned 2. It’s not a cure, but without Brineura, his quality of life would be far worse. Today, we are thankful. With the biggest smile on my face as he ran right into my arms at Payton’s soccer game this morning.