Wife sets out to complete her late husband’s film project on children with acute flaccid myelitis (AFM)

by | Mar 12, 2022 | Rare disease world

This week’s blog shares the story behind the rare disease documentary When the Lotus Blooms.  If you are interested in learning more about Sarah, her story or would like to learn how you can be a part of this filmmaking process, visit the campaign at www.whenthelotusblooms.com.

“Even in the worst conditions, something beautiful can grow”

Sarah Potter is a mother of two from Naperville, IL. She met her darkest day in July of 2020 when her husband Scott passed away suddenly of pancreatitis. Scott Potter was a filmmaker who aimed to share lesser known stories with the world. One of his final project ideas was a documentary about children diagnosed with Acute Flaccid Myelitis.

The film was meant to shed light on the struggles these children faced, and the hardships of their families and caretakers as they navigate an entirely new way of life with this widely unknown condition. 

AFM is very difficult to treat, leaving those afflicted confused and driven to raise awareness for research and treatments. Scott had even begun interviewing families, becoming close with them in an effort to share their stories authentically and emotionally. Sarah and her family had to face a new path of their own when they lost Scott. Now, in the wake of her loss, she has decided she will finish the film. Transitioning from speech pathologist to filmmaker, her new passion has driven her to look at the story from a new perspective. Sarah is navigating her own grief, while these families are coming to terms with this new life for their children that have been diagnosed with AFM.

For the last month it has become Sarah’s mission to raise the funds needed for the documentary project. This funding would provide the ability to visit more families and allow their stories to be told. Throughout this journey, Sarah has already met incredible authors, therapists, and survivors of other rare diseases that have made this process more meaningful than she had ever imagined.