Tag Archive: Batten’s disease

Battens Disease, A Parents Nightmare

     In case you haven’t been following the news you may have missed the story of little Hailey and her mom Miranda’s unfortunate encounter with Air Canada and Air China. Hailey, who is five, has Neuronal Ceroid Lipofuscinoses or Battens disease. She has lost some brain function, has seizures ( at least 50 a day,…

Continue Reading »