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KOLBY'S STORY: Thanatophoric Dysplasia Personified

His mother placed her finger in the hand of this child whose prenatal diagnosis was "not compatible with life;" whose future was bleak; whose death was imminent. When the child sqeezed back, her heart exploded in celebration. One moment. Two lives. An epiphany.

This is Kolby's Story. It is his life. When we received his diagnosis of Thanatophoric Dysplasia Type 1 (TD), we were heartbroken. An extreme form of Dwarfism, TD is fairly rare and always lethal. The doctors gave us no hope- not even the slightest chance- and we believed them.

His mother searched the internet for information on the disorder and was overwhelmed with the technical data available online. It all seemed so cold and dry. It was pointed and accurate, but also incredibly heartless. She would have loved to see somebody's story out there- something that acknowledged the human element of TD, that shared more than the hard facts of the genetic mutation but that shared the hearts and lives that have been transformed by TD as well.

To honor our son, and to help future parents of TD babies, we decided to share Kolby's story with all who would listen.

Kolby's Story Before Birth
Kolby's Story of Birth
Kolby's Story of His Stay at Home Hospital
Kolby's Birth Pictures
A Miracle in Pictures
Kolby's One Week Pictures
Kolby Comes Home!
Kolby Goes Home
Kolby's Funeral Service
Dad's Artwork