Sebastian's Story

Images Captured by Simply B Photos

Sebastian brought soul and love to the world, a wonderful baby to everyone who cared for him. When he was born, several problems were identified and eventually he was diagnosed with CHARGE syndrome, a very complex disorder that includes physiological abnormalities, heart defects and breathing problems.

Immediately after his birth, he was whisked into intensive care to manage his breathing and other problems, leaving his mom and dad shocked and shaken. Sebastian was a born fighter, though, and overcame many hurdles, including several surgeries, meningitis and a stroke.

Although he only lived just shy of eleven months, and it was a frightening time for his family because of his many lengthy hospitalizations, Sebastian brought so much intense love that the world is a different place because of him. “Sebastian was loved by everyone he encountered and he brightened their days,” says his mom Amanda. Sebastian was an old soul with a big smile. He was a unique baby, enjoying a good dose of CNN and cautious with his precious smiles. His favorite toy was his stuffed “Wolfy,” a dignified and wise animal that matched Sebastian’s powerful personality. He went through so much, and had so little time to enjoy life, that he’s easily described as a “grumpy little man,” but Sebastian was a loving and serious little boy, engaging and intelligent beyond his lifespan.

Sebastian passed away with the love of his family surrounding him. His legacy and memory burn brightly for all the people touched by his strength, intensity and heart-melting smile.

Story Written by Andrea Lee