October 31, 2011
Fan who fights the odds is LA King for a day
When the announcer introduced the players at the Los Angeles Kings season home opener at the Staples Center Oct. 18, 15-year-old Jared Tilliss was on the roster. Tilliss was chosen as the Kings Honorary Player of the Game, based on an essay he wrote describing his community service and his struggle to overcome disabilities caused by a seizure disorder.
As honorary player, Tilliss got to ride the Zamboni during intermission, meet the Ice Girls, and stand in the spotlight during the second period as the announcer described Jared’s struggles and accomplishments to the 18,000 hockey fans attendance.
“I think I was in shock when I was introduced just the same as one of the players and coaches,” Jared, a Kings fan since he was 8, wrote in an email interview. “I couldn’t believe that I was on the big screen at Staples. I was treated like a KING.”
Tilliss has a form of non-convulsive epilepsy that causes dozens of tiny seizure a day that erase parts of his memory. Jared showed symptoms in preschool but wasn’t diagnosed until he was 7. He has tried dozens of different medications and a surgery, but he still has seizures. Despite speech and language impairments and learning disabilities, he challenges himself daily, his mother, Stacy Tilliss, said.
“The beautiful thing about Jared is he fights through it and is still able to make progress and be successful. Professionals such as doctors, therapists and educational professionals don’t really know how he does it,” she said.
Jared says a positive attitude, a team of supporters, and a lot of hard work has kept him thriving, along with parents who believe in him and encourage him.
Tilliss is a student at Fusion Academy in Woodland Hills, which has a one-to-one teacher-to-student ratio, and values community service. He is a regular Friday volunteer at Jewish Family Service’s SOVA Community Food and Resource Program, stocking the food pantry and filling orders. Through his school, he volunteers at MEND (Meeting Each Need with Dignity), an organization that works with the impoverished.
Two years ago Tilliss celebrated his bar mitzvah at Congregation Or
“Temple is very important to me it gives me a place to belong like a second home,” Tilliss said.
For his bar mitzvah, his teacher creatively transliterated each syllable so Tilliss could lead prayers, with his teacher by his side and Diet Coke at the ready, since caffeine, along with high doses of valium, help control his seizures.
Rabbi Paul Kipnes said he, along with nearly everyone else at Or Ami that morning, was moved to tears by Tilliss’s perseverance.
“I looked out at the crowd of family and friends. On their faces I saw utter amazement; reflected in their eyes was the wonder that this young man, in spite of all the challenges he faces, had led the prayer service so beautifully,” Kipnes wrote in a blog.
Tilliss is aware of his power to influence how those with disabilities view themselves, and how others view them, which is one of the reasons he was so thrilled to be chosen as honorary player at the Kings game.
“I want people in our community to know that even if you have a disability you can still make your life wonderful,” he said.