A Mystery Illness
A Search for a Cure
A Mother Daughter Love Story
By Victoria Jackson and Ali Guthy
Published: October 16, 2012
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.
Told in alternating viewpoints, Victoria and Ali narrate their very different journeys of coming to terms with the lack of control that neither mother nor daughter have over NMO, and their pioneering efforts and courage to take their fight to a global level.
Bringing their story to light with raw emotion, humor, warmth, and refreshing candor, SAVING EACH OTHER is the extraordinary journey of a mother and daughter who demonstrate how the power of love can transcend our greatest fears, while at the same time battling to find a cure for the incurable.
As a mom, I wasn't sure I wanted to read this book. Then again, as a mom, I needed to read this book. A mother's greatest fear is something happening to their children. You pray for a healthy baby and when you are blessed with one, you think all your worries are over until, your baby becomes a toddler, then goes off to school and then college, etc. As a mother you are always going to worry about your children, forever. At each stage, you think you have made it and then BAM! there you are in another stage with a whole new set of worries.
Victoria Jackson was the Mother of all Worriers. According to her daughter Ali, "she had the worry bases covered. Not just the bases - she had the bleachers, the dugout, and the entire field covered." Victoria Jackson has worked hard her whole life for everything she has. She started at the bottom and has since become a powerhouse in the cosmetic and infomercial industry. But, beyond all those successes, the only ones she truly cared about were her three children. That much I can tell from this book. As a mother, I identified with her drive, her worry, her fear, and her determination to "fix" this disease.
This book chronicles Victoria's fight against the disease and Ali's struggles with maintaining her life as a high school student and athlete as well as fighting a disease she doesn't even know she has until she agrees to hear the name. You follow them along to doctor appointments, tennis matches, weekend getaways, as well as their inner most thoughts. This story shares the good and the bad with the reader and shows how to you can make it through the worst of it.
Because of the Jackson-Guthy fortune, they were able to really make leaps and bounds when it comes to research and finding the best doctors for Ali. Nowhere in the book was insurance mentioned. Nowhere in the book did Victoria mention having to struggle with their insurance company with whether or not a procedure or drug would be covered. If they wanted to receive care from a doctor, they went to see him/her. If they wanted a nurse to come to their home to give treatment at all hours of the day, she did. To me, this isn't the norm. Because of their financial status, Ali's treatment was different from what most patients receive in this country. I wish that wasn't the case and frankly, so does Victoria Jackson. Something must be done with our health care system. But, for Victoria, at first this was about saving her daughter. Then it became saving the many other families suffering with NMO.
Ali is an amazing young woman. She is wise beyond her years and even though much of her life has been privileged, she has had more struggles that any of us would bear to handle. Throughout all of this, her positive attitude was inspiring. Even though she struggled with excruciating pain, she always found the silver lining, like when looking at their "Connect the Docs" map and pointing out that at least having NMO has helped her knowledge of world geography. Ali is a bright light in her family, I am sure.
Even though this book is sad and a bit self-indulgent at times, I think you will find it inspiring and heart felt. All proceeds from this book directly support scientific and clinical research for NMO.
For more on the foundation, you can find them at www.guthyjacksonfoundation.org or http://spectrum.guthyjacksonfoundation.org. Watch the video below of Victoria and Ali on THE ELLEN SHOW telling their story.
Thanks to FSB Associates for sending me a copying of this book for review. This review is my honest opinion. I was not compensated in any other way for this review. boo