Courage in the Face of Apert: Victory Against All Odds While Living with Apert Syndrome

Shayne's diagnosis of Apert Syndrome (Acrocephalysyndactyly) is typically characterized by hand and feet webbing and fusing, misshapen cranial bones, progressive immobility of joints, and cervical spine, cognitive issues associated with CNS malformations, jaw malformations and dental malocclusion, and eye, ear, and nose concerns. The incidence is rare, occurring in only 1 in about 2 million births.

Shayne has faced life-long issues with expected ear, nose, muscle and joint, eye, and other concerns. Clearly, one might anticipate some possible limitations and significant challenges in physical function and social, emotional, behavioral, and educational achievement. Well, don't apply the words "possible limitations" with Shayne! Those words are simply not in his vocabulary. Shayne graduated from high school, college, and university with a major in radio and TV and went on to more technical training and career in wastewater management. Moreover, Shayne pursued physical challenges of road cycling and has been a consistent award winner in competitions around the country. He continues to participate in the rigorous training required and success in cycling competitions!

Additionally, over the years, Shayne has shared his life experiences and has challenged and inspired others with Apert Syndrome and similar conditions which are associated with physical and emotional challenges. The diagnosis of Apert simply did not define Shayne Stillar! He was not an Apert patient, but rather a person with a diagnosis of a condition called Apert. And he has demonstrated so convincingly how to rise above the challenges, explore the possibilities, seek out opportunities, and with resolve and fortitude, identify purpose and take charge of his own life journey and destination.

Now, Shayne has prepared this book with the aim and desire to share his experiences, challenges, and opportunities, and to challenge others to reach high and to achieve their potential. To quote Shayne: "I just want to help people!"

Karlind T. Moller, Ph. D

Professor Emeritus

University of Minnesota

School of Dentistry and Department of Speech-Language-Hearing Sciences

Former Director and Coordinator - Cleft Palate and Craniofacial Program