​I was born with Noonan Syndrome and growing up, I felt like a complete anomaly. My single mom did the absolute best she could, but when I was diagnosed, she wasn't handed a roadmap. There was no interventional support, no family counseling, and no neurodivergent-affirming therapy. She didn't have parent advocacy groups to lean on, which meant we both struggled in the dark.

​When families get a rare disease or invisible illness diagnosis, they shouldn't be left to figure it out alone. People with Noonan Syndrome often fall through the cracks, leaving us isolated, struggling with our nervous systems, and trying to survive physical crashes and thermoregulation issues without the right tools, sensory accommodations, or community.

​I turned to the internet to build the "Safe Harbor"—a chosen family for neurodivergent, disabled, and non-disabled people to find support because I had nowhere else to go. But a digital community shouldn't be a replacement for actual healthcare and family support.

​We are calling for mandatory early-intervention resource kits to be provided to families immediately upon a Noonan Syndrome diagnosis. This must include direct access to neurodivergent-affirming therapy, parent education programs, and financial grants for sensory needs and lifestyle accommodations.

​No one else should have to grow up feeling like they are the only one with their operating system. Help us build a real Safe Harbor for the next generation.