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
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.