Her daughter may die by age 10, but this mom keeps fighting to cure her rare disease.
An average day for this mother means working as a business owner of the staffing company, Nextaff Gulf Coast, taking care of her two teenage daughters and finding a cure for her youngest daughter, Willow, who has a rare genetic disease.
“I just kind of have that mama instinct,” Olsen told “GMA.” “She could walk and run, but she walked like Frankenstein ... with her arms out and stuff.” “‘There's nothing you can do [except] take her home and be with her, and just try to keep her comfortable, and she will die,” Olsen said. Shortly after she was diagnosed, Willow went back to crawling and then she reached a point where she couldn’t move at all. She had to move around in a walker.
She immediately Googled other parents who had children with the same condition and came across a couple in Ireland, Alan & Michelle Finglas, who had created the MSD Action Foundation, inspired by their own son, Dylan, who had MSD. The organization’s goal was to raise $3 million for pre-clinical research, manufacturing of medicine and Phase 1 of the clinical trial.
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