Hi, I’m Nikki,
a rare disease mom just like you.
When my son Miles was diagnosed with spinal muscular atrophy (SMA), a rare neuromuscular disorder, at just eighteen months old, everything changed. I was suddenly thrust into the world of rare disease parenting, caregiving, and advocacy. That’s why I created Rare Mamas®—a supportive space for rare moms and rare mothers raising children with rare diseases and rare disorders. Whether you’re newly diagnosed or years into the journey, I want to help you navigate this path with bold courage, fearless faith, and unrelenting hope.
Let’s awaken the inner fighter within, build community, and rise together!