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. This is partly because the kind of genetic testing that can be done today is more advanced than ever, and can find the underlying causes of multiple chronic health issues, and partly because it is, in fact, a rare disease. 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.