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Youngsters With Rare Diseases Beat Odds

Daytona Beach News-Journal

You often hear about children with rare afflictions that can’t be helped. Here are some young people who beat the odds:

  • A 2-year-old with Shone's syndrome, which affects how valves in the heart work. As the Daytona Beach News-Journalreports, a pediatric heart surgeon finally found a way to repair his heart. 
  • A boy, now 4, who became legally blind when he was 21 /2 because of a retinal degenerative disease. But it’s the type that responds to gene therapy, so that child is now enrolled in a clinical trial that could bring his sight back, the Gainesville Sun reports.
  • Teen siblings who both had Alstrom Syndrome, a condition only 800 other people in the world have. The brother died waiting for a heart transplant, but the sister lived long enough to get a new heart and a lung, the Gainesville Sun reports.  
Originally founded in December 2006 as an independent grassroots publication dedicated to coverage of health issues in Florida, Health News Florida was acquired by WUSF Public Media in September 2012.