Calif. Man With Rare, Incurable Disease Will Go to College | NBC New York
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Calif. Man With Rare, Incurable Disease Will Go to College

Ever since he found out he was admitted to the university, his father said he has been 'beside himself'



    Ben Sikorra, 21, smiles while playing foosball with his father and other university staff during orientation on Friday, Aug. 26, 2016.

    A 21-year-old man with a rare neurological disease will live out his dream of experiencing college life this year.

    Ben Sikorra of Westlake Village near Los Angeles has juvenile Batten disease, an incurable neurological degenerative disease that starts with blindness, said Sikorra’s father Joe Sikorra. He said those with the illness typically start experiencing seizures in their early teenage years, and lose their cognitive motor skill functions, adding that a lot of people with the illness die in their late teenage years or in their early 20s.

    Sikorra’s brother John died a year ago from the disease when he was 24, according to a spokeswoman for California Lutheran University. Sikorra has mostly lost his ability to see, and experiences cognitive difficulties.

    However, Sikorra had a "real desire to go to college," Joe said.

    "Ben has the desire to do everything in a big way, and he lives very fully, so when he saw all his friends talking about going off to college and wanting to have that college experience, Ben said, 'well me too, why not,'" Joe said.

    Joe and his wife wanted this experience for their son, but did not know how it would work since Sikorra functions differently than other students, Joe said.

    Then one of Sikorra's friends, who works at California Lutheran University, started asking if there was a way for him to get involved on campus.

    "They were just like, let’s make it happen. Don’t know, this is kind of new, but let’s just do it," Joe said. "And so I love that, I love their spirit, to just be inclusive and let Ben have this real opportunity to experience life like other kids."

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    Scott Silverman, Associate Dean of Students and Director of Student Life at the university, said, "it really felt like the right thing to do."

    "We designed a whole program for Ben, so he can sit in on classes, be participatory in our classes and out of class activities, and really just be involved as a full member of the university community," Silverman said.

    The university had Sikorra come in for an admissions interview also, and "Ben was nervous as can be," his father said. Silverman conducted the interview.

    "One of the things he said that really struck me as interesting and important, was how proud his brother would be of him to know that he’s in college," Silverman said.

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    Ever since Sikorra found out he was admitted to the university, Joe said he has been "beside himself." He said Sikorra is excited about this university in particular, and about the fact that it is a "church school" as he calls it.

    Sikorra will be sitting in on a marine biology class, and will take a freshman seminar, Silverman said. He is also going to be a hydration specialist for the school’s football team, and says he is excited to hang out with the team and other students.

    "It's one of Ben’s missions for a long time to go to college, and so I’m very humbled to be even involved remotely in this process to make this happen," Silverman said. "It's really an honor to have Ben join the community here."

    Sikorra attended the university’s orientation Friday sporting a purple California Lutheran University hat and a football t-shirt. He has already started meeting students and people around campus.

    Carl Court/Getty Images

    Silverman said it’s key to note not only what Sikorra will get out of this experience, but what all of the students and staff at the university are going to get out of it as well.