Sarah Potter, a former clinical professor in the speech pathology department at NIU, has taken over her late husband Scott Potter’s documentary, bringing awareness to a rare childhood disease. Potter has raised close to $50,000 of the $100,000 fundraiser goal to be able to produce the documentary.

“After my husband passed I started thinking about, you know, how I wanted to spend my time,” Potter said. “I really just wanted to make a shift and started learning about filmmaking and now I’m making a documentary.”

Running short on time

The documentary, “When The Lotus Blooms: A Story Of Acute Survival,” a project that Scott began working on in 2018, has until 1:59 a.m. on March 19 to reach its goal of $100,000 on Kickstarter.

The way that Kickstarter works is either the goal is met and they get to keep the money, or it isn’t and they receive no funds from the campaign.

“That’s not an outcome that is OK for me, this film has to be made and it’s not only for AFM (acute flaccid myelitis), which is obviously is a very rare childhood disease,” Potter said. “Really the film is going to be about going through unexpected and having to grapple with accepting the current circumstances and how you can move forward with them.”

Opportunity to shine a light on a rare disease

Scott wanted to help people to be able to tell their stories. After a professor at Benedictine University in the public health department reached out and told Scott there was a story to tell with AFM in order to bring awareness to it, he was all in, Potter said.

“Acute flaccid myelitis (AFM) is an uncommon but serious neurologic condition. It affects the nervous system, specifically the area of the spinal cord called gray matter, which causes the muscles and reflexes in the body to become weak,” according to the Centers for Disease Control and Prevention (CDC).

After making a Facebook post asking if anyone in California was or knew someone that was affected by AFM, Scott heard back from a family who had a daughter named Cami who was impacted by AFM, who Scott then interviewed. 

“She (Cami) is now seven, she got AFM when she was two, so it’s been five years now and you can see in the video she is now walking a little bit and making a lot of progress,” Potter said. “The family has been very active in helping to advocate for both AFM and the documentary “When The Lotus Blooms: A Story Of Acute Survival.”

A history for telling stories

Scott worked at the Northern Star from around 2009 to around 2011, Potter said.

“He had a pretty regular pop-culture type column that he wrote (at the Northern Star) that he really really enjoyed,” Potter said.

While at the paper Scott participated in a beard-growing contest with a number of the other writers and then they covered it in the paper. “There were three other staff writers and they all shaved their beards and then they had a beard-growing contest of who could grow their beard the fastest,” Potter said.

Scott had a funny and dry sarcastic sense of humor where sometimes it was hard to tell if he was joking or not and that translated into some of his articles, Potter said.

After graduating from NIU, Scott got more involved and interested in film.

“One thing that he was really proud of was he worked with an organization that allowed adults with Down Syndrome to do plays and musical productions,” Potter said. “They actually did a Star Wars fan film piece about people with Down Syndrome and disabilities that were taking on the Empire.”

Scott was involved in some other music endeavors, played at places in the DeKalb area, was interested in circuit bending and enjoyed things that allowed him to be creative.

“Creative isn’t even a good enough word,” Potter said. “I think he was the most creative person I have ever met.”

In July 2020 Scott unexpectedly passed away after battling pancreatitis and had been in and out of the hospital.

When Scott was in the hospital the second time, Scott and Sarah spoke about what they were going to do when he was discharged. 

“He had always wanted to get a tattoo and I was always the very much not a risk-taker and I was like I don’t know…but at this point, I was like life’s too short let’s do this we should get tattoos after everything we’ve been through,” Potter said.

A month after Scott passed away, Sarah got a tattoo of a lotus flower.

“It’s just sort of a metaphor for me that even in really tough times and really dark places, something beautiful can grow out of that despite the circumstances,” Potter said.

A project waiting to launch

There is no set date for the documentary to be released as of now, but the goal as of now is to film more in the early summer and have it released by the end of 2022, Potter said.

“Grief and those kinds of topics seem to still be extremely taboo and not something that we deal with very well in our society…those are things that everybody can relate to,” Potter said. “We’re just looking at in particular the lens through families that deal with AFM as a rare disease diagnosis as well as my story of going through the loss of a spouse… I think it’s something that everyone’s going to be able to take something from.”

Sarah Potter is partnering with Treasures in Naperville, 121 South Washington Street, to host an event for children in the local community which will include games, giveaways, a scavenger hunt and a cosplay panel. The event will be from 1 p.m. to 4 p.m. after the St. Patrick’s Day parade, which Potter said they will also be a part of. The parade is set to begin at 10 a.m., according to Visit Naperville. A few children who have been impacted by AFM will be present, Potter said.

For further information or questions, contact Sarah Potter at [email protected].