Willow’s Story

Where There’s a Willow, There’s a Way

Willow Cannan, the two-year-old daughter of Tom Cannan and Amber Olsen, was diagnosed with a terminal disease on May 9, 2016, called Multiple Sulfatase Deficiency (MSD). This rare genetic disease left Willow’s body unable to process the natural cellular waste made in normal everyday organ functions.

After Willow’s diagnosis, Tom and Amber were determined to fight this disease that had no treatments or cure. In 2016, after meeting with researchers, doctors, and other parents with children with MSD from all over the world, Amber established the United MSD Foundation with a mission that was close to her heart: cure Multiple Sulfatase Deficiency.

Because of Willow, thousands of children may have the chance to live a fulfilling life free from MSD. Her diagnosis led to the creation of the United MSD Foundation and a potential pathway to a cure for this terminal disease.

That is her legacy.

Willow fought a long, difficult battle that has been documented in the upcoming film ‘The Zebra and The Bear,’ that follows Amber’s advocacy journey to save her daughter and the struggles they faced. Amber had to accept that the work of the foundation may save future Willows, but not her own. Amber and her family did their best to navigate this impossible situation, and for Willow’s two older sisters, Kylee and Jenna, seeing Willow struggle was painful but, unfortunately, a normal part of their day-to-day life.

Willow passed away and became an MSD Angel on October 5, 2024. Her story is a reminder that it is an active decision to ignore the lives of MSD children who cannot speak up for themselves. Willow’s voice will continue to speak through the work and support of all MSD parents, advocates, and researchers all over the world. That is her legacy.