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.

In Chapter 1, you met Taylor before her diagnosis.

Now, in Chapter 2, hear how she went from caretaker to patient almost overnight.

Finding her faith in the depths of darkness.

She teaches us that behind death, life is waiting.

Taylor reflects on what it means to be different in a world that strives to be the same.

And she shares her final thoughts she will one day leave behind.

This is Last Words.

This is Taylor.

In the debut episode of Last Words Podcast, host Nic Main travels back to his home state of Indiana.

Here he sits down with Taylor, a previvor. Taylor is a 24 year old Li-Fraumini patient. Li-Fraumini syndrome predisposes Taylor to the risk of developing multiple cancers over her lifetime.

The National Institute of Health has stated that the five core LFS-related cancers that LFS patients are predisposed to are adrenocortical carcinomas (ACC), breast cancer, central nervous system (CNS) tumors, osteosarcomas, and soft-tissue sarcomas.

According to St. Jude,

50% of Li-Fraumeni patients will develop cancer before they are 30.

100% of Li-Fraumeni patients will develop cancer before they are 60.

Nic first heard Taylor’s story over 2 years ago when they were both volunteering for the same non-profit organization. That is when he knew when he launched Last Words Podcast, he wanted to bring her story to life.

His question was: what was life like for Taylor before her diagnosis?

In Chapter 1 of Taylor’s story, she recounts the lives of her father Bradley, aunt Jennifer, and younger sister Lexi. How she had to navigate the loss of her father and aunt, before she would ever receive her own diagnosis.

How her mother fought an uphill battle to uncover the truth in where these cancers came from.

And how her younger sister Lexi’s diagnosis would uncover the link between them all.

This is Last Words.

This is Taylor.