Jamesport girl talks about life with rare, incurable disease. By Katie Blasl
Meredith Engel March 1, 2015, 2:30 AM For a teen battling an extremely rare brain disorder, Taylor Swift is just what the doctor ordered.Johanna Benthal, one of Swift’s biggest fans, can often be heard belting out “Love Story” and “Shake It Off” with the help of her music therapist at NYU Langone Medical Center.Benthal, of Jamesport, L.I., was born with the CCM3 genetic mutation, which has been documented about 100 times around the globe. It causes blood vessels in her brain to develop abnormally and leak blood. The disorder has landed the 18-year-old in the operating room a staggering 91 times. But the power of music helps the brave teen feel her best. “It gives me a sense of purpose but also an opportunity to show what I have to offer to the world,” she told the Daily News. Benthal’s music therapist, Joseph Lee, meets with her and other patients [...]
Johanna loves music therapy at NYU! Read about her story in the book www.BreathingUnderwater.info.