Giving birth to Jacob was supposed to be the happiest moment in Ellen's life, but for her and her husband Jeff, the joyful moment turned into their worst nightmare when they learned Jacob had Canavan Disease: a devastating cerebral degenerative disease of infancy. Jacob would never see, speak, walk, or sit up. There ie no treatment or cure. He would die. Maybe in six months. Maybe in two years. No one knew. In some ways, the worst was yet to come, for not only was Jacob born with a death sentence, but his disease would ...
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Giving birth to Jacob was supposed to be the happiest moment in Ellen's life, but for her and her husband Jeff, the joyful moment turned into their worst nightmare when they learned Jacob had Canavan Disease: a devastating cerebral degenerative disease of infancy. Jacob would never see, speak, walk, or sit up. There ie no treatment or cure. He would die. Maybe in six months. Maybe in two years. No one knew. In some ways, the worst was yet to come, for not only was Jacob born with a death sentence, but his disease would require as many as eight serious operations within his first year. The unbearable helplessness of a parent forced to endure with impotence the endless agony of a son in constant pain. He required constant, round-the-clock supervision. The strain and stress on the family was unbelievable. And yet, as Ellen painstakingly chronicles in this raw but unforgettable memoir of a mother and her son, "Despite all his disabilities, Jacob loves life more than anyone I have ever met. He shows me how to live each day to the fullest." Jacob is eight years old. He continues -- despite the odds -- to live each day to the fullest.
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