Meet Maxwell: Our Reason for Rogue
- Karyl Vassilaros
- May 22
- 4 min read
Every business has a backstory, a reason, and a spark that started it all. For us at Rogue Brownies, that spark and reason isn't just about baking brownies and sharing them with our customers or a passion for baking. Our real reason for Rogue is much simpler. It is because of Maxwell, my sister's son, who was diagnosed with severe Coffin-Siris Syndrome.
What is Coffin-Siris Syndrome?
Coffin-Siris Syndrome is often characterized by significant developmental delays, distinctive facial features, and abnormalities of the fingers and toes. For Maxwell, as for many children with CSS, this means navigating daily challenges that include seizures, blindness, deafness, heart defects, and more.
It's caused by a spontaneous change in one of several important developmental genes, and like many rare conditions, it means families like ours embark on a unique journey of learning, advocacy, and finding joy in unexpected places.
There's no cure for CSS, so care focuses on supporting each child to reach their fullest potential through therapies and managing their specific health needs.
To learn more about Coffin-Siris Syndrome, you can visit these links.
A Day in the Life of Maxwell
The reality of life for my sister Jenny, and the 'why' behind so much of Rogue Brownies, really hit home on a recent visit. I’d gone up to Great Falls to work on brownies with her, pulling in around 4 PM. No sooner had I unpacked, it felt, than her oldest daughter was suddenly unwell, her still-undiagnosed condition flaring up, and they were whisked off to the ER.
Hours later, they returned, exhausted but thankfully okay for the moment. Just as we were all trying to settle down for the night, a different kind of alarm sounded – sounds from Maxwell's room. I rushed in to find him mid-seizure. Jenny was there in an instant, calm amidst the storm, using the magnet for his VNS implant to help stop the larger convulsions.
After he was cleaned up and the intense seizing subsided, Max thankfully drifted back to sleep, though smaller tremors continued through the night – a constant reminder.
Mornings with Maxwell have their own rhythm. He’s gently helped out of bed, and then it’s time for his absolute favorite: Yoplait Strawberry Yogurt. Once that’s enjoyed, his focus shifts to his beloved couch spot, a cozy blanket, and a fresh ream of paper, each page destined to be meticulously folded into a specific shape and carefully stacked. Maybe it's his unique way of finding order and calm. Witnessing this, you see not just the challenges, but the incredible resilience, the routines born of necessity, and the profound love that shapes every single day.
To Communicate
When it comes to communication, Maxwell definitely does things his own way – and we've learned to follow his lead. Jenny and his amazing teachers have explored all the tools you can imagine: sign language, detailed picture books, specialized iPad apps designed to give a voice through images. But Max? He has his own system.
He’ll take your hand and pull you directly to his desire, using your hand to point or reach for what he needs. It’s a beautiful, if sometimes frustrating, puzzle we try to solve together. We often go through five or more 'Is it this one? How about this?' moments before we finally land on what he’s trying to tell us. If we choose wrong, he’s quick to push our hand back, a clear 'nope, try again!'
Those moments, when the understanding just isn't clicking, are tough. There's a real ache in not being able to immediately grasp what he needs. But it’s also in those moments that you see such incredible determination – his to be understood, and ours to understand.
Ready for the Golden Moment?
The "Boujee" Boujee Berry is waiting to help you celebrate your own worth.
Our Biggest Goal Yet
Navigating Maxwell's world, especially the communication hurdles, has taught Jenny an incredible amount about patience, advocacy, and the fierce need for solutions that truly fit your family. It solidified her resolve that if the existing systems don't work, you build your own.
And that's the deepest truth behind Rogue Brownies. It's Jenny's way of ensuring Maxwell is always understood, always cared for, without compromise. Our ultimate goal, the one that keeps us baking and dreaming, is to build our own dedicated commercial kitchen. Imagine this: a space designed not just for perfect brownies, but with a dedicated, fully equipped room right next to the main operations, built just for Maxwell. This would allow Jenny to lead this business, to thrive as an entrepreneur, while Maxwell receives the constant, specialized care he needs, right by her side.
Our dreams for Rogue Brownies are big, because our love and commitment to family are even bigger. It’s all intertwined.
How You Can Help Us Reach Our Goal
So, that's the heart of it all. That's Maxwell in a nutshell and that's our reason for Rogue Brownies. His journey and Jenny's determination to improve life for him and her kids isn't just our inspiration, it's our mission. It's why that vision of building our own commercial kitchen with a special space built just for Maxwell, means everything to us. It's about building a future where Jenny can continue to nurture both her son and her business, without having to sacrifice one for the other.
Thank you, truly, for taking the time to read our story, to understand our 'why' behind our rebellious treats. Every single brownie enjoyed, every kind word shared, every bit of support for Rogue Brownies fuels this dream for Maxwell, for Jenny, and for our entire family. It helps us move one step closer.
We invite you to:
Share this story: If it touched your heart, perhaps it will touch others too.
Learn a little more: About the incredible spirit of others kids like Maxwell by visiting the Coffin-Siris Syndrome Foundation
Join our Rogue Community: Follow our journey on Instagram or Facebook
And Yes, enjoy the brownies: Know that when you do, you're supporting a dream that's much bigger than just delicious chocolate.
Commenti