"There’s Nothing We Can Do” Isn’t Okay: A Mother’s Fight for Rare Disease Gene Therapy

Speak Up For Your Health · Jan 20, 2026 · 29m

What happens when a parent refuses to accept “there’s nothing we can do” for a child with a rare disease?

In this episode of Speak Up For Your Health, Archelle Georgiou speaks with Amber Olsen and filmmaker Patrick O’Connor about their new documentary, The Zebra and the Bear—and a mother’s seven-year fight to advance gene therapy for a rare disease.

Amber’s daughter, Willow, was diagnosed at age two with Multiple Sulfatase Deficiency (MSD), an ultra-rare, progressive genetic condition with no known treatment. Instead of stopping there, Amber spent the next seven years learning the science…