Four-year old fights fatal disease with new treatment


Ely Bowman is a four-year old bundle of energy. He loves driving his car in the backyard of his Irvine, California home. He practices his bowling technique with his parents, Bekah and Danny. And has an affinity for talking dinosaurs.
But every two weeks, things aren’t so fun. That’s when Ely goes to Children’s Hospital of Orange County (CHOC) where he fights for his life.
Ely has CLN2, one of many types of a fatal disorder called Batten disease. His brother, Titus, died of it last year at the age of six. The disease is extremely rare, only occurring in about 2 to 4 of every 100,000 births in the U.S. Inherited from parents who each carry a recessive gene, the disease has no cure. But a breakthrough treatment is giving the Bowman family hope.
Doctors are giving Ely a newly FDA-approved drug, Brineura, which acts…



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