Noah entered this world via a planned c-section and as soon as he was born, a code blue was called. This was unexpected and unexplainable - at one month old, Noah was diagnosed with a rare life-limiting disease, myotubular myopathy. Myotublar Myopathy is a rare form of muscular dystrophy that affects (mostly) boys and presents with severe muscle weakness requiring breathing support using a bipap and feeding support through a g-tube. We were told boys with his diagnosis usually do not make it to their second birthdays and we endured conversations about our "options" for Noah. We knew we only had one option; our son was a fighter and as long as he was fighting, we would do the same. We also quickly tapped into the network that existed for Noah's rare disease and learned of so many reasons to be hopeful, things that were on the horizon for research and possible clinical trials. We learned that part of being an advocate is factoring in what the doctors knew, but also finding out what they didn't know. Having a network that can provide parents resources for rare diseases is profoundly important for the support it provides and the collective focus on finding solutions - whether that is in policy, research, or what car seat to buy. Noah is a happy baby and has a boundless spirit and will to live. In our home, we are committed to maximizing Noah’s life and his life experiences and we share united and guiding belief that Noah will be cured one day, and we support Chloe's Fight for Rare Disease Foundation because thankfully we know the impact of how research projects have the potential to translate to cures and we want to support work that advances this for us and others. We have so many reasons to be hopeful and hope is a powerful thing.