This notebook is a living record of Hannah-Rose’s journey.
It’s where her story continues beyond the beginning. A place to share updates, moments of progress, challenges, hospital days, small victories, and everything in between. Some entries are informative, some are emotional, some are simply real. All of them are written with honesty and love.
Hannah-Rose was born with arthrogryposis, and while that diagnosis is part of her story, it does not define her. These entries reflect her strength, determination, and the reality of life navigating medical systems, therapies, and everyday family life with a child who does things her own way.
The Notebook
This notebook exists for connection. For families walking a similar road. For those wanting to understand more. And for anyone who has followed Hannah-Rose from the beginning and wants to keep walking alongside her.
There is no right place to start. Read from the beginning, the latest entry, or wherever feels right to you.
THEY SAID SHE WOULD NEVER MOVE HER LEGS..she missed the memo
It was one of those dark days that feels like it will never end. I thought I understood what the doctor was saying at first arthritis and I pictured my nana sitting in her chair, her bones sore, and I thought maybe my baby would feel the same. That was all. I didn’t understand the weight of the words coming next. Then the doctor came back in, papers in hand, calm as if she was asking about lunch, and said, “We can arrange a room now for an abortion and sterilization.” I froze. Pardon me?
The Casts She Was Never Supposed to Kick Off
It’s hard to explain what it feels like when your child does something the specialists once told you would never happen.
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.
The Question that collapsed America.
After our meetings, calls, and new connections, the plan to get to America felt like it was finally becoming something real. We had support. We had advice. We had direction. And slowly, piece by piece, we started lining up what we needed to make it happen.
We contacted our GP to request a letter supporting travel for medical reasons.
The Tenotomy
Surgery day hits different. You can prep yourself on paper, talk it through with every doctor under the sun, pretend you’re ready, but when the actual morning arrives your whole body calls you out.
