Santa Barbara Magazine Spring 2013 : Page 68

SB PEOPLE Victoria Jackson & Ali Guthy a mysTerioUs iLLness is no maTCh for a mom on a mission “ The firsT hard-hiTTing sympTom was a period of sudden, extreme nausea in early 2007 , almost a year before i was diagnosed,” says ali guthy, who was 13 years old when she felt the onset of what lasted for a month and stopped as abruptly as it had started. “Then, in february 2008 , one night i felt a sharp pain in one of my eyes ac-companied by blurred vision that worsened in the following weeks.” What began as a few visits to mayo Clinic doctors—who didn’t think the symptoms would result in anything serious—ended up be-ing the diagnosis of neuromyelitis optica ( nmo ), an extremely rare autoimmune disease that affects the optic nerve and central nervous system and can cause blindness, seizures, paralysis, and even death. doctors initially gave her four years to live. “When ali was diagnosed, i hoped that it was a terrible mistake,” says her mother, Victoria Jackson, the founder/ Ceo of Victoria Jack-son Cosmetics who lives in Carpinteria with her husband, Bill guthy. “in June 2008, she had the first of the nmo attacks on her spine. Watching her go through such excruciating pain and partial paralysis brought out the mother warrior in me—i couldn’t accept the odds that the doctors had given her.” at the time of ali’s diagnosis, “there was so little on the internet and in the general medical field—i honestly didn’t know where to turn,” says Victoria. spurred by the lack of information available, Victoria and Bill founded the guthy-Jackson Charitable foundation, guthyjacksonfoundation.org , later that year to raise money to fund biomedical research worldwide. “our mission began with the goal of better understanding nmo, discovering ways to treat it, and ultimately finding a cure.” fast-forward six years—and a lifetime of learning. “since being diagnosed, what’s changed me is the gift of being part of our foundation and connecting to our global community of patients, families, and doctors,” says ali, now a 19 -year-old UC santa Barbara sophomore who manages her symptoms through a balance of medica-tions, natural supplements, and a strict diet. “But i should stress that every nmo patient is different. i take every-thing on a day-by-day basis and focus on the positive.” Victoria and ali recently released Saving Each Other: A Mystery Illness, a Search for a Cure, a Mother Daughter Love Story (Vanguard press, 2012 )—a memoir of their journey, told in alternating viewpoints. “This experience and the inspiration embodied by ali and all of the patients we serve has helped save me from the fears of what i can’t do,” says Victoria. “it’s like the truism that suggests you never know what you can accomplish until you have to.” –Gina Z. Terlinden SPRING 20 13 Martin Gore CLOCKWISE FROM TOP : Ali and Victoria; Saving Each Other ; Ali speaking at the foundation’s annual round table in Los Angeles last year. 68 S ANT A BARBARA

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