Rio Linda's Brian Chadaris, Rare Skin Disease Victim, Dies at 24

5:03 PM, Dec 21, 2009   |    comments
  • Brian Chadaris adjusts his bandages in the mirror before seeing friends who came to visit him while hospitalized at Shriners Hospital for Children in Sacramento, in December 2001. Photo by Lezlie Sterling, Sacramento Bee
  • While on rounds at the Clinical Center at the National Institutes of Health in Bethesda, Maryland, resident physician, Tara Palmore, right, makes a face as she looks at the back of Brian's neck that is infected with pustules, July 31, 2002. Photo by Lezlie Sterling, Sacramento Bee
    
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RIO LINDA, CA - Brian Chadaris, a Rio Linda man whose life-long battle against a rare skin disease has been chronicled in several News10 stories over the past 15 years, died Saturday from esophageal cancer. Chadaris would have turned 24 Sunday. Brian Chadaris' life in pictures

By the age of 12, Brian  was well aware of his unique place in the world. He had seen dozens of dermatologists, endocrinologists, pediatricians and oncologists.

However, not one of them could identify the disease that was causing large acne-like sores to his skin. His mysterious condition began at the age of 5 when Brian developed a small pimple behind one ear.

It was the beginning of a long and painful struggle to find answers and manage an increasingly voracious disease.

Brian's mother Rebecca spent every non-working hour scouring the Internet for answers, but there were none. Once the Chadaris family had exhausted all avenues in Sacramento, they tried San Francisco. There were no answers there, either.

As the years wore on, Brian's mother said she lost job after job as she became her son's primary caretaker and advocate. The pimple grew into large, painful pustules that eventually spread to Brian's chest, armpits and groin, often requiring surgery to remove.

Rebecca said Brian would drift in and out of depression over his increasingly scarred skin, but his mother and sister tried to buoy Brian's spirits with energy and positivity. When experimental drug treatments didn't work, the family sought out the specialists of the National Institutes of Health, the primary U.S. government agency responsible for biomedical and health-related research.

After numerous biopsies and DNA analysis, the Chadaris family discovered Brian had a mutation on a gene called Connexin 26, a mutation that was causing his skin condition and deafness.

Brian's condition was officially diagnosed as KID syndrome, a congenital skin disorder that impacts the patient's skin and other ectodermal tissues, like the corners of the eye and the inner ear. Only 70 known cases of KID (keratitis, ichthyosis, deafness) syndrome have been diagnosed worldwide.

Brian, his mother Rebecca and sister Cristina spent the next few years heavily involved in camps for children with skin conditions or burns. Shriners Hospital for Children in Sacramento became a second home for Brian as frequent debridement surgeries were needed to keep the lesions manageable and reduce infection.

Hope for an eventual cure faded and when Brian received a diagnosis of stage 4 esophageal cancer several months ago, Rebecca said her son was back to the despair that had marked his early adolescence.

But Rebecca said her family, Brian's girlfriend and other close friends spent the last few weeks of his life helping Brian put his experience into perspective and helping him see how many people he has touched with his story.

Brian died one day before his 24th birthday.

"Twenty-four years ago, I was in my birthing room and had just given birth to a beautiful baby boy," Rebecca said Sunday. "I really miss him."

Candlelight vigils for Brian were set for Sunday night at his home in Rio Linda and other locations worldwide by Brian's family and friends, including San Jose, Arizona, Oklahoma and Australia.

News10/KXTV

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