From Goodreads - On the surface, Victoria Jackson is the American Dream personified: from a troubled childhood and unfinished high school education she overcame immeasurable odds to create a cosmetics empire valued at more than half a billion dollars. Married to Bill Guthy—self-made principal of infomercial marketing giant Guthy-Renker—Victoria’s most treasured role was mother to three beautiful, beloved children, Evan, Ali, and Jackson.
Suddenly, Victoria’s dream life is broken as she begins to battle a mother’s greatest fear. In 2008, her daughter, Ali, began experiencing unusual symptoms of blurred vision and an ache in her eye. Her test results led to the diagnosis of a disease so rare, the chance that she had it was only 2%. Neuromyeltis Optica (NMO) is a little understood, incurable, and often fatal autoimmune disease that can cause blindness, paralysis, and life-threatening seizures, and afflicts as few as 20,000 people in the world. At the age of 14, Ali was given a terrifying prognosis of between four to six years to live.
Saving Each Other begins just as Victoria and Bill learn of Ali’s disease, starting them on a powerful journey to save Ali, their only daughter, including bringing together a team of more than fifty of the world’s leading experts in autoimmune and
NMO-related diseases to create the Guthy-Jackson Charitable Foundation.
Saving Each Other is the story of Victoria Jackson, her husband Bill, their boys and their daughter, Ali. When Ali starts to have eye pain, Victoria takes her to the doctor, just like any parent would. But what she is diagnosed with is life-altering - for all of them. Ali is diagnosed with NMO - "Neuromyeltis Optica (NMO) is a little understood, incurable, and often fatal autoimmune disease that can cause blindness, paralysis, and life-threatening seizures, and afflicts as few as 20,000 people in the world."
But not one to let the devastating news get them down, Victoria decides to fight. Victoria learns everything she can about the disease and tries to move heaven and earth to save her child. Ali knows how much her parents love her, and she works valiantly to be optimist with her prognosis. Victoria uses her keen business sense and sets up a foundation so that others out there will learn about this disease and not be blindsided like she was.
Not only do they have people researching the cure for NMO, but also other auto-immune diseases that have helped many. A strong faith, a powerful family bond of love, strength and determination set the tone for this page turning novel. It's inspiring, but make sure you have some tissues handy. One of the best quotes in the book that has resonated with me is by Lena Horne - "It's not the load that breaks you down, it's how you carry it." Pretty much like "What doesn't kill you, makes you stronger", but I like how this one really captures the moment of this inspiring book.
At the end of the book, there is acknowledgments by Victoria and Ali, as well as things that Victoria feels that we need to know if your struggling through NMO, as well as more information about the foundation she has set up. Heart-warming, emotional and inspiring, Saving Each Other is a book every parent should read, but it's also a wondrous journey of a mother and daughter facing their greatest fears and the love they share.
Every Day Is a Miracle
By Victoria Jackson,
Author of Saving Each Other: A Mystery Illness, A Search for the Cure, A Mother-Daughter Love Story
By Victoria Jackson,
Author of Saving Each Other: A Mystery Illness, A Search for the Cure, A Mother-Daughter Love Story
Every day is a miracle. That I do know, even though I forget it sometimes.
Isn't that kind of the point of 2%? It's like by throwing a rare light show or random nightmare storm in our direction, the universe is just trying to get our attention so we don't take anything for granted and just appreciate our days and the hours and minutes that make them up.
That's what's on my mind as I talk to a mom who has just lost her son, my daugher Ali's age, to Neuromyeltis Optica (NMO). She sounds so strong. For all these years I've been waging war with the image of Ali having to be wheeled across the stage at her graduation, maybe not even getting there. Maybe that's why I'm looking for ways to delay the ceremony. And here is a mother whose son didn't make it. Not only that, incredibly, she's calling not to talk about her loss but to thank us for the work of the foundation that gave him longer than they had expected. She lets me know that friends and family have sent in donations for our Guthy-Jackson Charitable Foundation to be used in his memory. Her voice is clear and resolute as she tells me to call on her for anything she can do to help raise awareness in the ongoing search for a cure.
When I get off the phone, sad and mad that we couldn't do more, I fight a flood of fearful thoughts and just try to be in the moment to appreciate where we are. The truth is that every worst fear that I could and did imagine for Ali -- none of it has happened. The dire prognosis that we were given hasn't come to pass.
It's true that I have lived too often with the subliminal concern that special events and usual rites of passage may be her last. The irony, of course, is that she prefers low key. But my impulse was always to give all the kids happy memories and make all the details so memorable that they'll be able to relish them long into the years to come.
Even thinking that there could be a cap on the years to come for Ali is so sacrilegious, not even something I allow myself to think about, that I compensate by making every milestone the ultimate.
Senior prom, of course, had to be the absolute best in the world because (a) it's prom, (b) there might not be another event like it and (c) I never went to prom and refuse to let her miss out on anything that life has to offer.
The logic and the love were really uppermost in my mind. But then again, finding the most amazing dress and then having it altered -- I went a little crazy, almost going so far as to tell the tailor that it has to be perfect because only God knew how much time she had left.
Evan once told me that you have to try to just have faith in the world. That's the lullaby I kept trying to sing to myself now. He has always said that to me. Still, I looked around at other moms at the pre-prom party and realized that probably no other mother was thinking of her daughter in her very special dress the same way I was thinking of Ali.
This piece is excerpted from "Saving Each Other: A Mother-Daughter Love Story" by Victoria Jackson and Ali Guthy. Available from Vanguard Press, a member of the Perseus Books Group. Copyright 2012
Copyright © 2012 Victoria Jackson and Ali Guthy, authors of Saving Each Other: A Mystery Illness, A Search for the Cure, A Mother-Daughter Love Story
Author Bio
Having achieved success as a Hollywood makeup artist, cosmetics entrepreneur and television infomercial pioneer, Victoria Jackson prefers to think of herself as "a goodwill ambassador for makeup."
A recognized trailblazer in the infomercial industry, Jackson altered a global beauty aesthetic with her "no makeup makeup" -- a foundation that was the cornerstone of her eponymous line Victoria Jackson Cosmetics, which has enjoyed over a half billion dollars in sales, and continues to grow.
Jackson has also garnered a devoted following through her two briskly selling books: Redefining Beauty: Discovering Your Individual Beauty, Enhancing Your Self-Esteemand Make Up Your Life: Every Woman's Guide to the Power of Makeup, a deeply personal account of her experiences in business.
Today, Victoria's primary focus is the Guthy-Jackson Charitable Foundation, which is dedicated to funding biomedical research in the search to understand the pathophysiology and biochemistry of Neuromyeltis Optica (NMO) Spectrum Disease. It is her greatest hope that "together we will reverse the effects of NMO and eventually cure this disease."
Married to husband Bill Guthy of infomercial giant Guthy-Renker, Victoria Jackson is the mother of three children and together they reside in Los Angeles.
For more information please visit http://www.guthyjacksonfoundation.org and http://www.vanguardpressbooks.com, and follow the authors on Facebook, Twitter, andYouTube
I am very interested in this book. My daughter in law has Takayasu's arteritis which is an extremely rare auto-immune disease. She saw so many doctors but they could not diagnose it until after she lost her eyesight.
ReplyDeleteThank you and all the other bloggers who are holding giveaways for this book!
Carol Wong
THanks. I would love to win this book!
ReplyDeleteWow, went through many doctors for my daughter also. No one could figure out what was going on as she slowly lost her eyesight when she was 5. We went through many doctors, traveling to NYC for a test only given in 3 cities in the US. We finally found she had a tumor that no one could see. She also has Chiari Malformation which is a brain and spinal cord disorder.
ReplyDeleteFollowed on GFC …as Paul T / Pauline T(Paul Tran…pls use emscout9 at hotmail dot com instead of gmail to contact me)
ReplyDeleteThis book sounds fantastic, I going to have to buy it. Thank you for sharing..
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