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Our Story

Sebastian embodies courage and strength at the tender age of 6. He is a fantastic, selfless big brother and an inspiration to his younger sister as well as his entire family. He enjoys reading, trips to the zoo, playing with LEGOs and puzzles, listening to classical music and experiencing museums. Sebastian often requests to listen to the classical music radio station, immediately citing the name of the composer and/or composition. When the piece is complete, he has a satisfied smile as the announcer confirms his prediction. Sebastian’s mornings include going over his daily schedule and, with his acute memory, he’s also usually the one reminding you to stick to it. Who, what, when, and where are some of his favorite questions, always wanting to be in the know. Sebastian’s joyful and endearing disposition makes it tough to ever feel discouraged in his presence.

Sebastian has re-written the book on how to live beyond any medical definition, having broken rules and guidelines in the sh...