Nobody would choose the life that Sonoma native Cody Cordellos lived. Least of all Cordellos himself.
He knew intimately what it was like to endure a rare, debilitating and tormenting tissue disease that is said to feel much like having been horribly burned from head to toe. Cordellos might lament his lot and give in to self pity, but he also maintained his wry sense of humor and stubbornly wrung from life what simple pleasure and consolation he could.
“I was not supposed to make it past the age of 3 years old,” he wrote not long ago. “So I’m very lucky I’ve made it this long.”
Cordellos, for whom most touch was agony but who, even so, touched the lives of many in Sonoma Valley and beyond, died Friday at a Marin County hospital. He was 32.
The condition he was born with, epidermolysis bullosa, not only ravaged his skin but severely stunted his growth and development. He told The Press Democrat in 2012 that he was fully grown at 5 feet tall and weighed just 65 pounds.
“Seventy on a good day,” he quipped at the Sonoma apartment he was able to afford because friends and supporters raised money for him.
The blisters, sores and scabs on his thin skin required fresh dressings at least three times a week. His primary caregiver was his mother, Julie Rasmussen, also of Sonoma. She said that to properly remove and replace the bandages took her three and a half hours.
Rasmussen said though her son suffered terribly, he did find happiness where he could.
“He had a lot of friends who cared about him,” she said.
Over the years, those friends included Steve Thrasher and Michael Sterner. Cordellos was 5 when Thrasher became a fatherlike friend, treating the beleaguered kid to his first Giants game, and small plane flight, and later hosting benefit car shows and concerts to help him live independently.
Cordellos, declared Sonoma Valley resident Thrasher, “was a tough little dude.”
Sterner and his wife, Laurie, made contributions to Cordellos’ care and upkeep through their nonprofit Butterfly Fund. The couple gave the charity that name because the skin of children with epidermolysis bullosa has been described as being as a fragile as a butterfly’s wings.
Steve Sterner, who left the valley some years ago and lives now with his wife near Grass Valley, said he ponders how Cordellos suffered — far longer than most people afflicted by the noncontagious disease — and “I try to think about what he was put here to do.”
“I know he touched a lot of people,” Sterner said.
Cordellos loved Facebook and used the online forum to connect with others living with epidermolysis bullosa. They would share how their days were going, what medications and procedures worked or didn’t, maybe what foods they liked to eat.
Cordellos only rarely left his apartment, so he appreciated a chance to catch a ride to a market with a volunteer from F.I.S.H., Friends In Sonoma Helping. It was a real treat for him to watch a movie or play a video game with his younger sister, Tori, now 19. Or listen to music.