Evelyn Mann

Patient Leader

As a mother, caregiver, blogger and author, I love to advocate for children with TD Dwarfism. This rare and considered lethal form of dwarfism can occur in 1 in 20,000 births. There are over 200 forms of dwarfism with Thanatophoric Dwarfism (TD) considered to be not compatible with life. My website (www.miraclemann.com) and blog offers hope that children with TD can live and even thrive. My son’s miraculous story has been shared on The Learning Channel as well as Fox35 Orlando and WFLA Channel 8 Tampa. When I was pregnant with Samuel and after his birth, I had no examples of hope. We were told of two survivors with Thanatophoric Dwarfism who lived in Japan. One passed at 3-years-old and another at 7-years-old. That is all the information we had to go on. No parents to call, no hope from the doctors, and no smiling children to point to. Little did I know then, my son would become a beacon of hope for future families. In my memoir, Miracle In My Living Room, I share the impact my little man has had on these special families. Having no knowledge of survivors, many parents are devastated by this “not compatible with life" diagnosis. My desire in writing this book is to pass on hope where often none is found. Through my website and social media channels, I receive messages from parents all over the world seeking hope for their children. Recently I heard from a family in Russia and Mexico. Samuel’s story continues to inspire others world wide.

Location

Tampa, FL

Nominations

Best Kept Secret
Evelyn Mann

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