Welcome to The Notebook, a blog about Hannah Rose her journey and the awareness we’ve gained along the way. We never intended to create a website; we simply wanted answers. When we discovered Arthrogryposis, we had to figure everything out on our own. Now, everything we’ve learned is here for you, for us, and for anyone who needs it.
The Notebook
It’s honest, sometimes messy, and filled with love and hope. If our story can help even one family, it will be worth it. You’re welcome to walk this path with us you’re not alone, and every step matters. xx
The things we carry
There’s the obvious stuff we carry the kind of things every parent knows by heart. The baby bag that somehow weighs more than the baby, packed for every possible situation. Paracetamol and Brufen for before casting appointments. Teething gel Jack and Jill’s, the one that actually helps. Extra nappies and bottles.
Parent Support & Mental Health
When you hear the words Arthrogryposis for the first time, the world tilts. It’s not just a diagnosis it’s a landslide of questions, fears, and the sudden pressure to become a full-time advocate, medical translator, and emotional anchor before you’ve even finished your morning tea.
When the world started listening.
A few days after the Givealittle page quietly went live, something unexpected happened. We weren’t prepared for it, not mentally, not emotionally, not in any way. Dan’s phone buzzed with a message from a reporter at the Otago Daily Times. He explained that he’d come across Hannah-Rose’s page, read her story, and felt moved enough to reach out. He wanted to help us share her journey with people who weren’t on social media, people who lived offline, the ones who could easily miss stories like ours unless someone physically put it in front of them.
Supports, Advocacy & Grace
It took me a good two weeks to even say the word arthrogryposis. After hearing the devastating news to abort, it felt like I didn’t sleep for weeks. Everything felt heavy. The air, the noise, even time. I remember sitting there wondering how something I’d never heard of could suddenly become my whole world.
UNDERSTANDING ARTHROGYPOSIS
The name Arthrogryposis comes from Greek arthro meaning joints, and gryposis meaning curved. It’s a word that sounds complicated, almost scary, but at its core, it simply describes stiff or curved joints. For us, it’s the word that first knocked the wind out of me, the word that entered our lives and changed everything.
When Hannah-Rose was diagnosed, it wasn’t just a medical term. It was a label that came with fear, confusion, and a thousand unknowns. What I learned quickly is that understanding it doesn’t make it any less overwhelming, but it does give you something solid to hold onto something to guide you through the uncertainty.