Customer Reviews

The Official Parent's Sourcebook on Rett Syndrome: A Revised and Updated Directory for the Internet Age

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Unfortunately any book for the Internet Age will start to become obsolete before it is even printed. While this book provided a good presentation and relevant resources, in over a decade many of them are dated or broken.

If you have a daughter with Rett Syndrome, a better resource is the virtual treatise on Rett Syndrome by Kathy Hunter, New Rett Syndrome Handbook, 2nd Edition (ISBN-10: 0977064409 ISBN-13: 978-0977064403). Kathy Hunter is not only the author but founded the International Rett Syndrome Association (IRSA) in 1984 with friends and families with individuals with Rett Syndrome. IRSA's first office was Kathy's kitchen table. I am privileged to have met Kathy & her daughter Stacie who turned 35 in May 2009. Kathy's passion, motivation & drive created an organization which is one of the only real resources for families with a daughter who has Rett Syndrome. A test to determine Rett Syndrome was only developed in December 1999. Rett Syndrome affects only 1 in every 10,000 to 15,000 girls. Our daughter has Rett Syndrome. When she was first diagnosed we were shocked and terrified, which over time turned to anger and frustration. Now we believe we are proactive and outspoken, although our effects pale to those of Kathy Hunter. Her book & and her organization IRSA are a must for anyone with a daughter with Rett Syndrome. The first edition, (ISBN-10: 0966952804 ISBN-13: 978-0966952803), although outdated by recent developments, is well worth reading even if you order the second edition from IRSA. Having seen and read parts of the second edition before publication, I can say it is even better, greatly expanded & updated. More information about Rett Syndrome can be found at UnicornMeadows. Our daughter Laura has Rett Syndrome but received her Angel wings at 9:32 AM on April 17, 2010, please visit UnicornMeadows org.