Sonoma mourns passing of Cody Cordellos, 32

Since birth, Cody Cordellos had battled a rare genetic skin condition called Epidermolysis bullosa.|

Since birth, Cody Cordellos had battled a rare genetic skin condition called Epidermolysis bullosa. He lived almost 30 years longer than expected with the painful and debilitating condition, which is typically fatal.

He finally succumbed to the disease on the evening of Friday, March 24, at the age of 32.

Cordellos's condition was first diagnosed when blisters appeared on his fingers as a newborn at Sonoma Valley Hospital in 1984. Quickly, the fragile skin on his hands and feet blistered and turned raw. “Then it moved up and got worse,” his mother said in an interview with the Press Democrat in 2012.

The disorder so severely stressed Cordellos's system that he stood just 5 feet tall. The condition made him look and feel as though his body was covered by burns, with scabbing that never healed.

The community rallied behind Cordellos with periodic fundraisers over the years to help cover his extensive medical supplies, bandaging needs and medicine. For years, a group of friends and supporters raised money by putting on public events that include an annual motorcycle poker run, a car show and concerts.

Longtime family friends, Laurie and Mike Sterner, Steve Thrasher, Codi Binkley and others helped Cordellos live independently with donations from a small foundation they created (thebutterflyfund.org) to help young victims of epidermolysis bullosa and other catastrophic illnesses.

He only rarely left his apartment, but caught a ride to the market occasionally with a volunteer from Friends In Sonoma Helping (FISH).

“He was very outgoing and charming with a spark for life,” said his friend Daniel Hankins. “With everything that Cody was going through he still had an upbeat personality and he always put others before himself.”

According to Facebook posts by Cordellos, his health had been deteriorating over the past two years and he was in a great deal of pain. He had been treated at a succession of Sonoma, Napa, Marin and San Francisco hospitals as his kidneys failed, the sores on his skin grew worse and his weight fell to 40 pounds. He was at Marin General Hospital when he passed away.

Cordellos is survived by his younger sister Tori, and his mother Julie Rasmussen and his father Nick Cordellos.

A celebration of Cordellos' life is planned for 9 a.m. to noon on Sunday, April 23, at the Sebastiani Theater.

Email Lorna at lorna.sheridan@sonomanews.com.

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