Showing results by author "Emily Rapp" in All Categories

Like all mothers, Emily Rapp had ambitious plans for her first and only child, Ronan. He would be smart, loyal, physically fearless, and level-headed, but fun. He would be good at crossword puzzles like his father. He would be an avid skier like his mother. Rapp would speak to him in foreign languages and give him the best education. But all of these plans changed when Ronan was diagnosed at nine months old with Tay-Sachs disease, a rare and always-fatal degenerative disorder. Ronan was not expected to live beyond the age of three....

"Congratulations on the resurrection of your life", a colleague wrote to Emily Rapp Black when she announced the birth of her second child. The line made Rapp Black pause. Her first child, a boy named Ronan, had died from Tay-Sachs disease before he turned three years old, an experience she wrote about in her second book, The Still Point of the Turning World. Since that time, her life had changed utterly.