“Rare Mamas are less rare than we would like them to be. Millions of rare families manage everyday life with a level of uncertainty that would scare most. But as Nikki tells us in her beautiful book, Rare Mamas are a special breed, a group that will never stop fighting. We can all learn so much by just watching them live; they are true warriors for health and happiness!”

Dr Katia Moritz, director of documentary Undiagnosed and parent to two rare young adults