Rising Above: Facing the Dragon of Neurofibromatosis

Front Cover
Tate Publishing, Apr 3, 2012 - Neurofibromatosis - 216 pages
At four years old, a mysterious bump appeared on the inside of Beth's left wrist, so I took her to see a doctor. He brought out his books, studied them carefully, and returned with a startling diagnosis.
'Neurofibromatosis.'
In shock, confusion, and dismay, my mind reeled. What on earth was it, and how did Beth get it? Was there a cure? Could her older sister or the baby I was now carrying get it? These and many other questions begged for answers. Thus began my quest to find help for my daughter—one that would take many unexpected and nearly tragic turns.Rising Above: Facing the Dragon of Neurofibromatosisis the true account of Beth's indomitable, uplifting spirit while coping with a disfiguring and disabling disorder of her central nervous system. One hundred percent of cases are congenital, meaning if you aren't born with NF, you will never have it. But lack of knowledge leads to fear, and many think NF is contagious, causing those with NF, like Beth, to feel isolated and judged. Told by her mother, Janet, along with snippets of Beth's story in her own words,Rising Abovewill encourage those going through a difficult time, inspire those who are facing or have faced trials, and educate those who may not be aware of this tragic condition.
 

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User Review  - annie - Christianbook.com

I really enjoyed reading this book and I was able to feel what beth was going through with NF as I have to deal with it myself so I could relate to her situations. I really loved reading this book and I couldn't put it down it was well written and explained. Read full review

Contents

Foreword
13
Preface
15
Our Baby Beth Arrives
19
Siblings Childhood Fun and Challenges
23
Dark Shadows
29
Neurofibromatosis
33
Early School Years
37
More Adjustments
49
A Friend in a Time of Need
103
Going Home
107
Beths Family
113
How Can We Help?
129
Letters from Beth
143
Heartbreak
147
Shadow of Death
155
Surrounded By Love
161

Pets
53
High School Years
57
Working as a Nanny
67
Emotions and NF
73
Visiting Beth in Virginia
77
A Scary Experience
81
The Enemy Within
87
Seaboard Farms
91
The Wound Vac
169
Gratitude
173
Moving Out of the Burn Unit
177
Life Goes On
185
Looking to the Future
191
Afterword
195
Copyright

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