More Than a Mom: Living a Full and Balanced Life When Your Child Has Special Needs, by Amy Baskin and Heather Fawcett, 487 pages, 2006, $18.95. Woodbine House, (800) 843-7323, www.woodbinehouse.com.
Written by two mothers of special needs children, this everyday life manual covers all the bases. It provides practical advice on dealing with challenges from getting more sleep to hiring caregivers.
Topics include how to maintain physical and emotional health, stay organized, advocate for your child, change or start a career or business, maintain friendships and strengthen marriage.
Mothers from across the United States and Canada (including some who responded to an announcement in Quest) contributed to the important lessons and advice found in the book.
Mothers Never Die, by Beverly Rose, 183 pages, 2002, $16.99. Integrity Publishers, (615) 370-3230, www.integritypublishers.com.
This autobiography is a moving account of one woman’s physical loss and spiritual gain. At the pinnacle of her career as a clinical psychologist Rose received a diagnosis of mitochondrial myopathy.
Two months later, the debilitating disease had rendered Rose bedridden and her beloved mother unexpectedly died. She began to question the presence of God in her life.
With vivid language and captivating wit, Rose candidly recounts her life before and after the diagnosis and interlaces animated conversations with her deceased mother.
Her journey has brought her to a life “overflowing with joy, immersed in peace, and brimming with hope.”
Melodies of My Life: a Disabled Girl’s Journey to Womanhood, by Denedria Renee Banks, 100 pages, 2005, $11.95.iUniverse, www.iuniverse.com, (800) 288-4677; Banks, firstname.lastname@example.org, (323) 937-4633.
Banks received a diagnosis of Charcot-Marie-Tooth disease at age 9. Melodies eloquently describes her hardships, feelings of inadequacy and bouts with depression in this no-holds-barred, coming-of-age narrative.
In her own words, Banks explores the stages of her life that propelled her internal pursuit of self-love and happiness. During that pursuit, Banks learns to define herself outside of her CMT. Now a medical social worker, public speaker, business owner and author, Banks provides an enthralling and inspiring story.
Who’s Been Soaking in My Hot Tub? by Georgia Alderink, 50 pages, 2005, $12.95. PublishAmerica, www.publishamerica.com, (301) 695-1707.
Here’s the story of 10-year-old Harold and his clever companion Erle Stanley, a dog of uncertain pedigree. In the midst of solving a mystery, Harold and Erle befriend Priscilla, who uses a wheelchair.
Together the three embark on several exploits, solve mysteries, preside over a grandfather’s fitness program and find adventure. Alderink eloquently conveys the concept of friendship in this amusing tale.
A great story for the young, adventurous heart.
The Desert also Blooms, by Freda Jeffreys, 141 pages, 2004, $19.95. PublishAmerica, www.publishamerica.com, (301) 695-1707.
This book of poignant poetry by Jeffreys, who has limb-girdle MD, encompasses such themes as nature, faith, patriotism and life. A collection of short stories is also included.
The Cure: How a Father Raised $100 Million — and Bucked the Medical Establishment — in a Quest to Save His Children, by Geeta Anand, 343 pages, 2006, $25.95. HarperCollins/Regan, (212) 207-7000, www.reganbooks.com.
Wall Street Journal reporter Anand tells the story of John Crowley, who has two children with Pompe disease and started his own biotech company, Novazyme, to save them. He ultimately sold Novazyme to the Cambridge, Mass.-based Genzyme Corp., which completed the development and market approval process for the lifesaving Pompe’s drug Myozyme.
Crowley is a member of MDA’s Translational Research Advisory Committee.
Medical professionals who read The Cure will likely cringe at the tactics Crowley sometimes employed to push his agenda, and many parents will likely say they, too, could accomplish as much if they had the financial resources and connections of the Crowley family. But the success of Crowley’s relentless efforts can’t be brushed aside, and it’s fair to say that Myozyme might not exist today had it not been for his interventions. The author will donate 10 percent of all revenue she receives for the book to MDA.
Molecular Mechanisms of Muscular Dystrophies, edited by Steve J. Winder, 233 pages, 2006, $149. Landes Bioscience, (800) 736-9948, www.eurekah.com.
This isn’t a book for everyone, but for those who want to know what’s been learned about the muscular dystrophies and spinal muscular atrophy since the mid-1980s, this compilation of expert-authored chapters is unsurpassed.
The well-illustrated chapters are written by the best minds in neuromuscular disease biology. Many of the authors, such as Jeffrey Chamberlain, Elizabeth McNally, Kay Davies, Stanley Froehner, Michael Lisanti, Keith Johnson, Dominic Wells and Terence Partridge, have received MDA
The writing is aimed at professionals, but most college-educated readers can get something from the text, which is written in a narrative style.