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 toWomanhood, by Denedria Renee Banks, 100
pages, 2005, $11.95.iUniverse, www.iuniverse.com, (800) 288-4677;
Banks, dbanks1922@earthlink.net, (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’s 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
research funding.
The writing is aimed at professionals, but most college-educated
readers can get something from the text, which is written in a narrative
style.
