Family

In the world of rare disease, it’s even rarer to find people who truly understand your family’s reality. Those who know the daily battles, who have seen good days unravel in minutes, and who understand why a child simply going to sleep can feel like a victory worth celebrating. Finding others who resonate so deeply is uncommon, and it is absolutely beautiful when it happens.

Over the last couple of nights, we’ve had the privilege of spending time with several AHC families, and it has been surreal to feel so connected to people we were meeting in person for the first time. Yes, we’ve seen each other on social media and Zoom for months, but sharing space under one roof is different. It’s special. Together we celebrated updates from home that everything was steady. We talked about future projects and scientific advances. We shared joy, grief, and the strange comfort of bonding over a cruel neurological condition. Even as I write this, it’s hard to fully comprehend.

Hannah and I often feel like imposters. We don’t feel worthy of standing alongside minds that are actively changing the worlds of science and medicine. We can’t pretend to fully understand the weight that these families have carried for a decade or more. We’re new to all of this, still uncalloused from years of pushing back against indifference.

But then you walk into a room with these families and are met with open arms, warm smiles and embraces, and the words “You are a part of our family now.”

These connections are rare for a reason. It’s not often that you unexpectedly find the place and the people where you fit so perfectly.