|Emne||Biography: science, technology & medicine; Medical profession|
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Om Two Small Footprints in Wet Sand
Thas is almost two. Like most well-loved children, she is happy. She laughs as she runs on the beach. But her footprints in the sand, with toes turned out, tell a different story. Two Small Footprints in Wet Sand relates the overwhelming tragedy experienced by a family as a result of a genetic disorder.A true tale told by a mother, its the story of a little girl, of family, friends, and the medical community united to define life by its beauty rather than its length. On the day Thas turns two, her mother, the author Anne-Dauphine Julliand, learns that her child has an untreatable genetic disease, the rarest of the rare, a silent disorder that will slowly paralyze her daughters nervous system and kill her. Metachromatic leukodystrophyMLDis the diagnosis. There is no cure. While the disease may be grim, neither this book nor the people in it are. Grace, dignity, and most of all love mark the lives of all those involved in the care of Thas. Julliand does not play down the pain of her child or of her family, or the exhaustion, discouragement, or burden each of them carries. She promises her daughter a full lifenot a life like other children havebut a happy life, a life of love. Thass family and the medical staff around her fight to provide comfort and efficient care, to conserve her dignity, to give her love, to add life to days when we cannot add days to life.