NEW ORLEANS -- When we first met Amber Olsen last year, she was on a worldwide mission, traveling to find a cure for her daughter's very rare genetic condition.
"This is the worst experience that you can ever go through. She is every day losing. We're losing her," said Olsen, who lives in Ocean Springs, Mississippi and has a business in Mandeville.
With MSD, multiple sulfatase deficiency, every cell in Willow Cannan's body is slowly dying. Her body can't make several enzymes that remove natural cellular waste. There was no research being done for a cure. Everyone told Amber it would take millions to fund science that would take years to find answers. But they underestimated the power of a parent's love, determination and persistence.
"It's really from concept to clinical trial in two years. It's unheard of. I mean, people told me it can't be done," she said.
Amber raised $2 million and found Dr. Steven Gray at UT Southwestern Medical Center. With that funding, he has already been able to treat this genetic defect in mice. But now another million dollars are needed to manufacture the medicine and try it in a human clinical trial.
"He's talking about we could be treating children (in a clinical trial) as early as late next year," Olsen said.
Willow is now 5-years-old. And it's possible that she would not even qualify for an approved clinical trial.
"It's terrible for her. It's devastating for her, but from a scientific stand point, there's a potential that a treatment for her disease can help these other six lysosomal diseases," Olsen said. "If we can save another family from having to go through this, it's worth it."
Friends are getting ready for a big fundraiser party Friday night at Mardi Gras world. Wiggin' out for Willow* is from 7 to 11 p. m. You buy tickets or just donate to help.