Published on: February 27, 2018
In honor of Rare Disease Day 2018, I’m sharing with you my experience so far in raising a child with a rare diagnosis. So rare, in fact, he shares the diagnosis with approximately 50 other people worldwide. For us, this means many things physically, and emotionally. It requires patience, the ability to acquire and hold on to new knowledge, the openness to learn how to care for your child in a way that does not come naturally, and making peace with unknowns. Let’s dive in.