What July 4th Means to a Rare Disease Mom in Santa Barbara

Reflections on freedom, parenting through advocacy, and choosing love over cruelty

Today is the 4th of July. For many, it’s a day for flags and fireworks. For us, it’s a day of reflection.

I started this Substack to share our story to humanize myself and my daughter, who was born with a rare disease. To talk about what it means to be a disability parent in Santa Barbara.

When I began advocating for Medicaid, for medical research, and fo…