Caregivers' Guide: Section 5

Once I stopped blaming myself and came to terms with it, it seemed to just flow into Ben’s life, and he became a happy, generous little boy, so different from the child who used to be lazy, moaning, and overwhelmed by the sense that he was different. All parents of children with ichthyosis hope and wish for improvements in their child’s physical condition. This is only natural. Wouldn’t it be nice if she could wear normal shoes, or if he could walk into a store without drawing stares? Yet, these are dreams that rely on the superficial assumption that “beauty is only skin deep.” Beauty is the inner person we want our children to become: a person who is bright and kind, loving and humorous, thoughtful and generous.


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