[Courtesy photo]

John Raymond “John John” Butterfield died April 25, 2017, after a lifelong battle with Hurler-Scheie syndrome.

John John was born at Allen Memorial Hospital in Moab, Utah on March 21, 1989, to John Erwin Butterfield and Cheryl Lynn Chappell. He spent most of his life in Moab, including all but half a year of school, graduating from Grand County High School in 2007. Hurler-Scheie syndrome is a genetic disorder that caused him to be shorter than everyone else and have a unique curl in his fingers, making use of his hands difficult.

Hurler-Scheie syndrome patients have an average life expectancy of 11.8 years because of organ damage or deterioration, but as is the Butterfield way, he was strong and stubborn, outliving the prognosis by 16 years.

Since he couldn’t do all the things a regular person could do, he clung to the things he could. His favorite activity was driving with rock music blaring through the speakers. At age 18, he worked at McDonald’s with his older brother Timothy, and took great pride being able to work before pain and difficulty made it impossible for him to keep working. He did, however, find other opportunity in the workforce when a few years later, he became a bar identification checker, a job he enjoyed because of how many nice people he met.

John John also collected knives and swords, loved tigers and eagles, had a pit bull named Ginger he took with him everywhere he could, and enjoyed watching Japanese cartoons. His favorites were DragonballZ and Naruto. He had a lot of friends in and around Moab and enjoyed hanging out with them, especially in the outdoors, and wanted the best for his friends and family, being the first and most aggressive critic of anything he perceived as a poor choice.

John John was preceded in death by grandparents Robert Butterfield, with whom he shares a middle name; Patricia Chappell and Leon Button. He is survived by parents John and Cheryl; brothers Timothy (Dustee) Chappell, Jason (Kira) Chappell and Patrick Butterfield; paternal grandmother Alice Meadows and maternal grandfather Robert Chappell; niece Serenity and nephew Jayden, and two more nephew/nieces on the way; best friend Braxton Hines; as well as many other aunts, uncles, cousins and friends.

A viewing took place in Salt Lake City on Wednesday, May 3, after which cremation took place. Two celebrations of his life, one in Salt Lake City and one in Moab, are planned for a later date.