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The severity of the condition was immediately apparent by the physical condition of the boy. Continuous pain and discomfort was quite obvious and his mother had to constantly care for him by taking care of his wounds and bandages. It took the boy's mother and a nurse to take care of him and the attention he needed was a 24 hour a day job. The devastation EB can have on not only the person suffering from it but the family is enormous. The severity of EB was summed up in one sentence when Jonny says at one point in the program that "he wishes he was never born." For me personally, the most moving thing about the story of this person was even though his health was declining and he knew roughly how long he had to live he didn't loath in pity but rather went out and did his best to experience life and make as many friends as he could...
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