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Health News Florida

Youngsters With Rare Diseases Beat Odds

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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-Journal reports, 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.