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, or Multiple Sulfatase Deficiency, prevents the body from processing natural cellular waste. Over time, it stripped Willow of her ability to move, speak, and simply be a child.
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.
She also founded the United MSD Foundation a nonprofit dedicated to accelerating research and finding a cure.
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 Last Words: Death Perception.
This is Amber Olsen.
This is a Death Perception episode of Last Words, where we explore death through the eyes of those who walk alongside it.
Disclaimer: The views and opinions expressed in this episode are those of the guest(s) and do not reflect the views of Last Words Podcast or its producers.