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They are the picture-perfect family, living a dream life in Southern California. She is Victoria Jackson, the make-up maven whose incredible business know-how helped her create her own cosmetic empire, and he is Bill Guthy, co-creator of the famed media marketing company, Guthy-Renker.
See also: Everything you need to know about caregiving.
But the outward appearance of their family doesn’t quite match the family’s haunting reality. Their teenage daughter, Ali, is inflicted with neuromyelitis optica (NMO), a rare disease associated with sudden painful attacks that can lead to blindness, paralysis and life-threatening seizures. The disease has no cure and little research has been done on it. The doctors gave Ali about four years to live…that was three years ago.
Not willing to lose her daughter without a fight, Victoria kicked her business savvy into high gear and founded the Guthy-Jackson Charitable Foundation, an organization that funds research to find answers that will lead to prevention, clinical treatments and an eventual cure for NMO. Now a mom on a mission, she’s assembled top doctors and scientists in a race against the clock to cure her daughter and the 20,000 others inflicted with the deadly disease.
When asked how far she’d go to save her child, she said, “to the ends of the Earth.”
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Caregiving can be a lonely journey, but AARP offers resources that can help.