Every Child Is A Masterpiece

Patricia Weltin

Beyond the Diagnosis began in 2015. My frustration at our 18 year diagnosis journey and the idea by a young artist to paint a child with a rare disease for her class collided to become a traveling art exhibit. Over 90 artists from around the world have donated their time and talent to paint children living with a rare disease. Over the past 9 years we have reached tens of millions of people around the world. I am both elated and stunned by our worldwide success. Awareness is the key to early diagnosis and intervention, support for research, promoting inclusivity, empowering patients and families, and bridging the knowledge gap in healthcare. I am immensely grateful to everyone who has made this happen, and we hope to have your continued support as we evolve to all childhood diseases.

One of our artists reached out to ask if he could paint the daughter of a friend whose child died from cancer. I began learning things about childhood cancer I had never known. I started scrolling Instagram to find families fighting childhood cancer. I wanted to understand their journey. To my horror, most of the accounts I found had lost their child to cancer. I had always believed that most childhood cancers were curable. The more I learned, the more I realized how little I really know. One Instagram account, run by the mom of a child with cancer, was filled with hysterical memes, and as I scrolled her timeline, I realized that I connected with everything she said. Her frustration, heartache, confusion, told with humor, were relatable in every way, and the differences between my ill children and hers shrunk.

On my journey as a “rare mom,” I learned that Hypermobile Ehlers-Danlos Syndrome was not rare at all, just “rarely” diagnosed. I worried that I no longer belonged, that when I called myself a “rare mom” I was being disingenuous or at least, not completely accurate. Where did my children fit? Where did I fit? We are “others,” that I know. All moms who have children with a disease carry a hidden anguish, just like me. They cry alone in their car, just like me. They worry about the future, just like me. I know that children with rare diseases are terribly underserved, underserved in a way I didn’t know existed until my children got sick, but who am I to deny a child the right to participate in this powerful, magical movement powered by love? “Rare moms” know that every child is a masterpiece.