Jacob the Batten Warrior

06/09/2026

06/09/2026

This video showcases many of the amazing children who have been dia...

06/06/2026

🧡 INTERNATIONAL BATTEN DISEASE AWARENESS DAY | JUNE 9 🧡

👫 Real people at the heart of our mission 👫

Between now and June 9th we will bring you the faces of children and young adults whose lives have been changed by a rare, devastating neurological disease. Real faces of courage, strength, resilience and love. Real faces behind every diagnosis, every challenge, every milestone and every memory.

Every year on International Batten Disease Awareness Day, we ask you to help make these faces impossible to forget.

Batten disease steals skills, independence and precious time from children and young adults, but together we can raise awareness, fund vital research and bring hope to families facing this journey.

This year, we invite you to join our global Forget Me Knot campaign.

🎗️ Tie a knot.
📸 Share a photo
💙 Remember.
🏷 Tag us on Facebook OR on Instagram.

Tie a knot to honour a child or loved one living with Batten disease. Tie a knot to remember those who are no longer with us. Tie a knot as a symbol of support for the families who care, advocate and fight every day.

✴Every knot tells a story.
✴Every knot creates awareness.
✴Every knot is a promise to never give up the fight.

🪢 Tie. Share. Remember.
🪢 Ties that bind, symbols that speak.
🪢 A promise to never give up the fight.

Most importantly, please consider making a donation today. Research is our greatest source of hope for better treatments, improved quality of life and, one day, a cure.

Together, we can ensure no family faces Batten disease alone.

🧡 Donate via our website here:
https://bdsraaustralia.org/index-donate.php

05/10/2026

Happy Mothers Day!

03/18/2026

Thank goodness it’s getting warmer. Yay for naps in the sunshine

09/10/2025

Sacrifice some blend to the little monster.

I was doing a bit of a prep day today. With the three boys in school this year I’ve started freezing the base for Jacobs morning blend to see if I could shave some time off our morning routine. The base for all his blends is yogurt, pears and prunes and it’s been pretty handy to just puree all those, push them through the strainer mix them and then freeze them, the hardest part was figuring out the ratios for the ingredients and having to think back to grade 7 math, but it’s figured out and it is very tasty.

09/07/2025

Burger night for everyone at our house!

(I apologize for some of the writing colours I tried to pick the easier ones to read but not all of them are great)

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.

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 😊