Twins Toby and Cory, and their little sister Izzy all have the rare condition juvenile Batten disease. Children with this disease experience devastating symptoms including sight loss resulting in blindness, tremors, epilepsy, problems with balance and walking, behavioural and psychological issues. And tragically, the disease is fatal. We have recently funded a study that could offer the first-ever medicine for children suffering from the condition - giving hope to parents Dee and Jody, that one
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Ellery is diagnosed with a progressive and terminal disorder known as Batten disease. This deadly disease takes away a child’s ability to walk, talk, speak, and see. As of now Ellery is still able to say a few words like “Mickey” and “Twinkle” but her parents know this will not last forever. Ellery’s mom wants the world to know that they try to focus on the joy but Batten disease is forever destroying a part of their family. | Special Books by Special Kids
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