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.
Elizabeth Hasselbeck interviews Eileen Benthal as a Mom responding to Sen. Harry Reid calling ObamaCare victims liars. For more on Johanna's story please visit Eileen's website http://freeindeedfreelance.com/caregiver
Sean Hannity invites Eileen Benthal to share the story of her daughter Johanna on Hannity's Obamacare Nightmares. https://www.facebook.com/Johannashopeforacure
The troubled implementation of the Affordable Care Act is threatening one local family with the loss of coverage they've relied upon for years. Eileen Benthal, of Jamesport, will speak about her predicament to Sean Hannity for a segment to air this afternoon on his radio talk show. [The segment will air at 4 p.m. on his WABC radio, 770 AM.] Her daughter, Johanna, 17, has undergone 86 surgeries since she was diagnosed at three months old with a rare genetic neurological disease that causes tumors to grow in her brain. Her parents' insurance plan has always covered her care, soaring to at least $100,000 per year in medical expenses. With the new rules and surrounding confusion, that coverage hangs in the balance. "I was in my daughter's hospital room when I was on the phone with the insurance company and they told me our plan would be terminated," Benthal said. [...]
By Amy Sacks / DAILY NEWS STAFF WRITER Saturday, December 18, 2010, 4:00 AM Legendary child starlet Margaret O'Brien was just a normal 3-year-old when she landed on the cover of the Saturday Evening Post with her cocker Spaniel-mix, Maggie. "He said, 'That's just the face we're looking for,' but he was talking about my dog," the actress said recently, recalling the fateful day in 1944 when she and her pup were discovered at a Los Angeles theater where her mother was dancing flamenco. The photo spread caught the attention of MGM Studios, which cast her in a one-minute role in "Babes on Broadway" and then a starring role in "Journey for Margaret." Judy Garland sang "Have Yourself a Merry Little Christmas," to O'Brien in her role as Tootie in "Meet Me in St. Louis." Unlike many child stars, O'Brien, who was born Angela Maxine O'Brien, was never in trouble in [...]
Parents of disabled and special needs children are particularly concerned about a health care system that could end up rationing care for some people, including their own children. By Penny Starr (CNSNews.com) – Rep. Trent Franks (R-Ariz.) on Tuesday shared a personal story that shows why he is passionate about protecting the most vulnerable in society -- and why a government-run health care program would not only fail to offer that protection, but could end up rationing care for some people, including children with disabilities. At a Capitol Hill press conference, Franks said the parents who brought their special needs children to Washington, D.C., had the most compelling stories to share. “But I would cite just one (story) that has a personal connection to me,” Franks said. The story involved an “old man” and his firstborn son, who was born with deformities of the mouth – a “missing pallet” and [...]