Boy Receives New Treatment for Rare Disease - NBC Southern California

Boy Receives New Treatment for Rare Disease

"You just have to be like, we're doing today. Because we have no idea what tomorrow brings," Bekah Bowman said.

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    NEWSLETTERS

    A boy battling a rare disorder is receiving a newly-approved treatment in Orange County. Vikki Vargas reports for the NBC4 News at 4 p.m. on Friday, August 11, 2017. (Published Friday, Aug. 11, 2017)

    Four-year-old Ely Bowman knows a thing or two about airplanes. Every two weeks, he and his family flew from Irvine to Ohio for a clinical trial for Batten's Disease, a rare nerve disorder.

    Now he and his family can drive to Children's Hospital in Orange for enzyme transfusion treatment, which was recently approved by the Food and Drug Administration.

    Bowman's older brother Titus died from the disease in 2016. There is no known cure.

    "I don't know what Titus' purpose was, but we would like to think it was to bring joy and open doors for his younger brother," Danny Bowman, the boy's father, said.

    The Bowman's are encouraged by Ely's condition because he does not suffer from continuous seizures like his older brother did.

    "There's this surrender to completely the unknown. You just have to be like, we're doing today. Because we have no idea what tomorrow brings," said his mother, Bekah Bowman.

    The Bowmans said they hope Ely's story will help others.

    "It's going to be a great story whatever happens. We're here to help others as well as help ourselves," Danny Bowman said.

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