Simple truth: It's hard for us rare-disease moms to get a break from caregiving. So we have to take some time upfront to PLAN a little time out. Here's my list of ten tips to plan for a caregiving break.
Hi, I’m Nikki, a rare-disease mom just like you. My son Miles was diagnosed with spinal
muscular atrophy (SMA), a rare, neuromuscular disease at the age of eighteen months old. I was thrown into a match I never expected. My inner
fighter was awoken. I believe that, like me, you have a brave fighter within you. I want to help you approach the rare-disease journey with bold courage, fearless faith, and unrelenting hope. I want to create a community of brave rare mamas supporting one another. Let's awaken your inner fighter and rise up!