Max Koji Tilsner
Max, 10 years-old, was surrounded almost constantly by people who loved him - his mom and dad, his little sister, his caretakers, friends and extended family. So it was during the night, tucked and slumbering in his own bed, that he decided to slip away to heaven on July 24, 2017.
Max Koji Tilsner was born August 10, 2006 in Ventura, Calif. with a rare genetic disease known as Hunter Syndrome (MPS 2). A degenerative condition that causes severe mental and physical disability. Max was diagnosed at the age of two and his parents, Hiromi and David Tilsner, of Ventura, were told by doctors to expect a shortened lifespan. David Tilsner and Hiromi Maruyama met locally in 1999 while dancing at Nicholby's on Main Street. They were married in a traditional ceremony in Hiromi's home town of Kobe, Japan in 2003. Both were world travelers, with many adventures under their belts. Together they agreed that Max would be the most challenging and exciting adventure of their lives, and they resolved to make his life as happy as possible for as long as he was with them.
There were many challenges: Setbacks and sleepless nights, surgeries and hospital stays. But there was also great joy; much laughter and endless hugs. Max thrived under his parents’ love and care. Max spent most of his days laughing and playing. He loved being in the water, either at the beach, in the pool, or even the bathtub. He liked a good car ride with his family. He enjoyed seeing people he recognized, taking them by the hand and leading them to an activity he was interested in. He enjoyed watching Japanese cartoons on his DVD player, and he was always up for a fun floor wrestle with Dad or his loving caregivers. His favorite food was chicken nuggets and Japanese mochi (sweets). Max and his little sister Mia would often sit side by side watching videos. During the day he attended Penfield School.