Crown Point teen with rare disease gets asked to prom
CROWN POINT, Ind. (WLS) -- Sophia Burns suffers from Rett syndrome. Rett's primarily affects only girls, presenting symptoms in the first six to 18 months of life.
Sophia's parents began to notice she was losing skills she had already developed at about six months. She was officially diagnosed with Rett's when she was 5.
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Her mother, Mimi Burke, tries her best to give Sophia, now 16, a normal life. They go shopping and set play dates, but life is limiting for the teen, whose brain fully functions though her body does not.
"I've accepted that she will never get to do a lot of the things normal girls get to do," Burke said. "She's not going to get married, she's not going to go to college, she wasn't going to go to prom, she wasn't going to have a friend."
Until Sophia met Tommy.
Tommy Benson is a star athlete out of Chesterton High School, and last season Sophia attended one of his baseball games. After hitting a home run, he gave the game winning ball to Sophia and the two became fast friends.
Football player Tim Tebow puts on "a night to shine" at churches across the country every year to give kids like Sophia a chance to experience normalcy at prom. So naturally, Tommy asked Sophia to be his date.
"I never even went to my own prom," he said. "I don't even like dances, but I like them with Sophia."
Sophia's favorite song to dance to is the chicken dance.
Tommy has since graduated and moved to Florida for a promising baseball career, but despite flight cancellations and winter storms, he made it back home this year to ask Sophia to the dance yet again.
"She just lights up when she sees him," Burke said.
Tommy stays in touch with Sophia throughout the year. The two text and are even planning a spring break vacation for Sophia to visit him in Florida this year.
"After all that she's been through, she deserves one night to be happy," he said.
Sophia frequently uses her voice machine to tell Tommy she loves him, more so than anyone in her family.
