World’s Rarest Disease

I was deeply moved by this mother’s attitude toward raising a child with Fibrodysplasia Ossificans Progressiva – an ultra-rare genetic disorder that causes extreme pain as the body’s soft connective tissues turn into bone. When a reporter asked whether she has ever wondered, “Why me?”, she replied, “Never. I’m glad he’s mine. I wouldn’t want anyone else to have him.”

It is one thing to say she is thankful to be his mother, but her heartfelt confession goes far beyond an expression of gratitude. It is a radical ownership of her fate – amor fati – and that spirit of acceptance and sacrifice is the central tenet of The Vault.