Bryce Cichocki Died of rare disease that shuts down internal organs

Bryce Cichocki, the 13-year-old Henderson boy who battled a rare genetic disease all his life, died Sunday in his mother's arms at Children's Hospital in Los Angeles, his father, Gayle, said.

He said their son, 13, was a "Star Wars nut" whose life ended amid a marathon showing of Star Wars movies. Hospital staff members were so touched by his courage in enduring a leg amputation last year that when he died they announced on the intercom, "Ladies and gentlemen, Bryce has left the building."

As a youngster, he was diagnosed with Bannayan-Riley-Ruvalcaba syndrome, a rare genetic condition that spawns internal masses and shuts down vital organs. Only about 2,000 people in the world have this so-called "orphan disease" known as BRR.

"He knew from a very young age he was dealt a pretty ugly hand, and he never let it slow him down," Gayle Cichocki said by telephone Wednesday following a memorial service for Bryce at Children's Hospital.

Another memorial service for him will be 1 p.m. Saturday at The Church of Jesus Christ of Latter-day Saints, 410 N. Valley Verde Drive in Henderson.

Bryce's aunt, Katherine Overkamp, of Norfolk, Va., described him as a "warrior" who "took life head-on" and inspired others to never give up.

"Bryce just grabbed every moment," she said. "Bryce suffered in his young life to show us all that strength comes from within."

His father credits him as being the driving force behind VIP soccer, a league for children with special needs. "He said, 'Dad, I want to play soccer.'"

With that, Gayle Cichocki became involved in running the VIP league where Bryce, at age 4, competed with kids his age and much older. "He would laugh and have a ball."

Bryce tried through the Make-A-Wish Foundation to meet Star Wars filmmaker George Lucas. But when that didn't pan out, he opted for a trip to take his family and a friend to Disney World in Florida in July.

"The people at Disney World were absolutely fantastic," his father recalled. "He said, 'This is the greatest trip I'll ever get in my life.'"

In his last year, Bryce became fond of "Checkers," a puppy he was given in the months following his leg amputation on Nov. 16, 2004.

"He was an incredibly special child," Gayle Cichocki said.

Besides his father and mother, Ruby, Bryce is survived by brothers Ryan and Darren.

The family prefers donations to Children's Hospital of Los Angeles and the Ronald McDonald House.