Jacob the Batten Warrior

07/13/2025

We have been fiddling with Jacobs seizure medications. It’s a risky game because as we lower doses the risk of seizures goes up so why lower dosages? Because some seizure meds are really hard on the body and because he smiles and giggles and it’s all fine and dandy until his levels drop too low and then he has seizures and ends up in hospital again because he’s forgotten he has lungs.

Tonight we are still trying to figure out the balance and Jacob had been giggly for most of the day, well enough he actually got to go in the standing frame again, but then something happened and he suddenly became very upset. Jacob is not one who cries so when he does everyone kind of jumps to it and he is very lucky to have two good brothers who were very concerned for him. Arthur assessed the situation and found Jacob had a scratch on his forehead and that must be the problem and he ran to grab a bandaid, he has yet to figure out how to open them though so Richard had to step and apply the band aide to Jacobs forehead. Was it the scratch that upset Jacob? Probably not but I’m pretty sure he felt the love from the brothers and it calmed him down.

There’s lots of times I wish we could live in a happy little bubble. I know I can’t fix a lot of things but I think maybe I can make some good little kids who can make things a little better. And I love bragging about them because they’re my bunch of weirdos.

07/11/2025

There’s not a lot to say but this sucks.

We’re thinking of you Charleigh's Journey

06/25/2025

Join us for an unforgettable evening of local brews, community spirit, and silent auction fun — all in support of families caring for children with rare, life-limiting diagnoses.

📅 Date: August 23, 2025
📍 Location: Tool Shed Brewing Company
🕖 Time: 7:30

Every dollar raised helps us provide essential medical equipment, medications, and accessible infrastructure to families who need it most. This isn’t just a fundraiser — it’s a night to raise hope.

🎟️ Tickets, sponsorships, and donation opportunities available at
👉 www.bradysfoundation.ca or in comments

Let’s raise a glass — and raise the bar for what family support can look like. 💙🍺

06/13/2025

School is a big part of Jacobs life and I love seeing how other Batten kids impact their schools. Way to go Eagle Elementary School for your inclusion! And looking good Ollies Purpose keep up the good work! Makes my heart smile 😊

06/10/2025

We made it down to Red Deer to see the city hall lit up for Batten Diseases Awareness.

I spent the majority of today going through my photos trying to find some really “good” Batten Diseases Awareness photos to make some post but as I went through I realized there has been so much and usually I post the positives but I realized how many videos I have of not positive moments and photos of things that at the time were like “oh Jacob, you’re so weird” and now are like “oh…. That was maybe a red flag”. We’ve been through some steep learning curves but luckily we are resilient.

Without awareness no one would know about this rare disease, if no one knows about it then there’s no one to fund research and no research means no treatment and no treatment means shorter life spans.

06/08/2025

June 9 is Batten Disease Awareness Day. Here’s our CLN1 crew.

CLN1 is one of the 13 types of batten disease, there is different types of CLN1 as well based on when symptoms present.

Batten disease is a constant problem solving challenge because as you can see each kid is so different.

This video showcases many of the amazing children who have been diagnosed with the CLN1 variant of Batten Disease. Each year, we produce a video in honor of ...

06/04/2025

Today’s Batten disease fact breaks down how the disease is inherited. SHARE THIS POST to educate, raise awareness, and help BDSRA reach its $100,000 fundraising goal: https://ow.ly/GGZe50W30wv

06/03/2025

Today’s Batten disease fact focuses on the number of people who have been diagnosed with this devastating disease. SHARE THIS POST to educate, raise awareness, and help BDSRA reach its $100,000 fundraising goal: https://ow.ly/kFjC50W1UWl

05/23/2025

Home again, off oxygen, still not feeling 100% but at least can breathe. We have an issue of figuring out if Jacobs irritability is from being sick and not able to clear a cough, a sore stomach, or a side effect of a medication change. It ends up being a game of wait and see.

05/20/2025

It’s easier to sleep when you have the sounds of home….. even if those sounds are chaos.

Jacobs having a bit of a hard time clearing a cough and breathing so we’re spending a little time in the stollery trying to get it cleared up.

05/09/2025

Brothers are super helpful when you’re trying to recover.

11/07/2024

Sometimes it’s hard to remember kids just want to be kids and to trust other kids.