This is a Death Perception episode of Last Words, where we explore death through the eyes of those who walk alongside it.

In this episode our host Nic Main travels to Mississpi, to meet Amber Olsen.

Amber was a mother of 3 daughters living an ordinary life through the lens of what society expected from her. She sought to provide a living, buy the car, and create the home.

Then on May 19th, 2016 Amber’s youngest Willow was diagnosed with MSD.

MSD known as Multiple Sulfatase Deficiency left Willow’s body unable to process the natural cellular waste made in normal everyday organ functions.

This rare disease would strip Willow’s ability to be a normal child. Placing her in a regressive state for the next 7 years to come.

Amber was faced with a choice.

Watch more children like her daughter Willow suffer,

Or search for a cure that would change the entire landscape for MSD patients for years to come.

Almost 10 years later, Amber has raised over 3.6 million dollars in her continued fight to combat MSD and find a cure.

Alongside finding the United MSD Foundation.

In this episode Nic and Amber reflect on Willow’s legacy.

The core concepts of being a caregiver.

The documentary “The Zebra and The Bear” based on Willow’s journey.

Questions submitted from listeners like you.

And what it means to transition out of losing someone to a terminal illness.

This is Death Perception.

This is Amber Olsen.