Nio’s Journey 💙
Our son Nio was born in November 2025 and quickly became the heart of our family. Like most parents, we expected the early months to be filled with late nights, milestones, and learning how to navigate life with a newborn.
But in early 2026, our world changed.
After weeks of worrying symptoms, hospital stays, and countless tests, Nio was diagnosed with Menkes Disease, a rare and devastating genetic disorder that affects the body’s ability to regulate copper. It impacts the brain, nervous system, and many other parts of the body.
Most people have never heard of Menkes disease — we hadn’t either.
The diagnosis forced us into a new reality filled with specialists, treatments, and an uncertain road ahead. Nio has begun receiving copper injections, which are currently the only available treatment. These injections are not a cure, but they give him the best chance possible.
Despite everything he has faced already, Nio is the strongest little boy we know.
Why We’re Sharing His Story
Menkes disease is incredibly rare, and because of that, research and awareness are limited. By sharing Nio’s journey, we hope to bring attention to this disease and support efforts toward better treatments and, one day, a cure.
Our family’s faith and the support of our community have carried us through the hardest moments.
How Throttle & Thread Connects to Nio
Throttle & Thread started as a way to build something meaningful for our family and our future.
With Nio’s diagnosis, that purpose has only grown stronger.
Running this business allows us to:
• Be present for Nio’s care
• Support our family while navigating his medical needs
• Share his story and raise awareness for Menkes disease
Every order placed through this store helps us continue that mission.
Follow Nio’s Journey
We share updates about Nio’s story and progress on social media using the hashtag:
#NiosJourney
Your support, prayers, and encouragement mean more than we could ever express.
Thank you for being part of our story.
Menkes Disease Awareness
If you'd like to learn more about Menkes disease or support research, please consider visiting organizations dedicated to rare disease research and awareness.