Books and Media: Disability Specific Resources: Spinal Muscular AtrophyTweet
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This book by Rich Ochoa and Duane Hale tells the story of Duane's life with Spinal Muscular Atrophy and all that it entails. At four years old, his parents were told that he wouldn't live past his teens. That was forty-two years ago and he has now outlived some of those doctors. What happens to a rambunctious little boy whose disease turns him into a man who can't move? How does such a man graduate high school as Student of the Year, work twenty years for the police department, buy a house, get married, father and raise a son? This is the story of a man and the strength he derives from his family and his community.
Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity
Ben Mattlin was born with Spinal Muscular Atrophy, a congenital weakness from which he was expected to die in childhood. Not only did Mattlin live through childhood, he became one of the first students in a wheelchair to attend Harvard, from which he graduated and became a professional writer. His advantage? Mattlin’s life happened to parallel the growth of the disability rights movement, so that in many ways he did not feel that he was disadvantaged at all, merely different. Miracle Boy Grows Up is a witty, unsentimental memoir that you won’t forget, told with engrossing intelligence and a unique perspective on living with a disability in the United States.
The Official Parent's Sourcebook on Spinal Muscular Atrophy: A Revised and Updated Directory for the Internet Age
This book by Icon Health Publications was published in 2002 for parents who have decided to make education and Internet-based research an integral part of the treatment process for their child with SMA. Although it gives information useful to doctors, caregivers and other health professionals, it also tells parents where and how to look for information covering virtually all topics related to Spinal Muscular Atrophy, from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research.
Laughing at My Nightmare
With acerbic wit and a hilarious voice, Shane Burcaw describes the challenges he faces as a twenty-one-year-old with Spinal Muscular Atrophy. From awkward handshakes to having a girlfriend and everything in between, Shane handles his situation with humor and a "you-only-live-once" perspective on life. While he does talk about everyday issues that are relatable to teens, he also offers an eye-opening perspective on what it is like to have a muscle-wasting disease. This book is availible for pre-order and will be released October 14, 2014.