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Imagine being told that unless you put locks on the refrigerator door
and pantry, your child could die from morbid obesity due to a flaw in the
brain that causes insatiable hunger. In the summer of 1996, Jimmy
and Cheryl Couch received the devastating news that their daughter, Elana,
had Prader-Willi Syndrome, a rare, complex genetic birth defect that
causes compulsive eating, low muscle tone, short stature, incomplete
sexual development, cognitive impairment, and behavior difficulties.
Although doctors had informed the Couches shortly after Elana's birth that
she was "not normal" and a "floppy baby," it would be
three long years before they received the diagnosis that would forever
change their lives. In My Rag Doll, Cheryl Couch shares her personal
account of the events that transpired from the day of delivery until
kindergarten age.
"Cheryl Couch draws her readers into the emotional roller coaster world
of PWS. Cheryl also shares with us how education gave her strength, faith
gave her hope and Elana gave her a new perspective on how sorrow and joy go hand
in hand. I highly recommend My Rag Doll, which is the first extensive book
ever written by the parent of a young child with PWS."
- Janalee Heinemann, Executive Director, PWS Association (USA)
"...This book lends a humanistic approach to a condition that is common
to those of us working in the area of genetics, but rare or unheard of by others
in our society. I highly recommend My Rag Doll to other Prader-Willi
Syndrome family members and friends, healthcare providers and those interested
in the story of a little girl with special needs due to a condition that is
under-recognized, under-reported and under-studied."
- Merlin G. Butler, M.D., Ph.D., F.A.C.M.G.
Children's Mercy Hospitals and Clinics, Kansa City, Missouri
"An inspiring story that will resonate with any family. The
Couches' determination will touch you."
- The Huntsville Times, Huntsville, Alabama
To Order, call the PWSA(USA) office at 1-800-926-4797
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