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
Adjusting after surgery.
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.
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.
Tiny Wins, Big Steps
After months of hospital trips, casts, and scans, life slowly started to find its rhythm. It wasn’t sudden there were no dramatic breakthroughs just small, quiet victories that reminded us how resilient Hannah-Rose truly is. The first time she lifted her head during tummy time, I felt a rush of pride I can’t fully explain. Every week, each new movement, each small adjustment in her casts, became a reason to celebrate. Not perfection, not giant milestones just progress.
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 Casts, the Hospitals, and the Little Wins
After the birth, everything blurred. One minute we were still taking in the tiny perfection of her toes, the next we were being handed a schedule that felt like it belonged to someone else’s life. Hospitals became our second home before we’d even settled into our first.
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 Gift of Grace
Leaving Te Anau was one of the hardest choices we made. We’d built a life there farm work, deer and sheep, the quiet mornings and wide-open sky. But once we knew Hannah-Rose’s condition and that we’d need an elective C-section, it wasn’t really a choice anymore. The hospital was nearly two hours away if something went wrong. We needed to be closer.
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?