New Documentary to Focus on AFM Children and Families

In the western suburbs of Chicago, Sarah Potter and her team of fellow filmmakers are working towards completing a documentary film her late husband Scott began filming in late 2019 about Acute Flaccid Myelitis (AFM). This film was incredibly important to Scott. He knew it would be an uphill battle to get the film funded, but that didn’t stop him from working on that process from the beginning.

Scott unexpectedly passed away in July of 2020. His wife Sarah, then a speech pathologist, couldn’t help but think about Scott’s film projects. She knew the AFM documentary was one he would have wanted finished above all others. With the encouragement and support of the filmmaker community, Sarah took the reins of finishing the film by picking up where Scott left off. She immersed herself in networking, research and learning about how documentary films are made.

As Sarah continued to explore the nature of what the film would be about, she realized there were parallels of the experience of losing someone incredibly close to you and a rare disease diagnosis. Both of these events involve an initial acute phase that has to be survived, but oftentimes the aftermath of it is where the long journey begins. The film explores the arc of emotion and levels of acceptance that individuals diagnosed with AFM and their families go through as they grapple with this diagnosis, while following Sarah as she explores her own self-discovery after her tragic loss.

The outcome of the film has many potential goals. It is critical the story of AFM be documented in 2022, a potential AFM outbreak year. It is important to garner the attention from the medical community, like pediatricians and emergency room doctors, to bring awareness of this rare disease, in order to properly diagnose patients with aligning symptoms. The intensity of caregiving and advocacy that is needed on the part of families can be all-consuming, especially for those with a rare disease. The lack of widespread knowledge, standards and support in medicine forces caregivers to be the experts, all while they are juggling parenting during a traumatic event. While this process is incredibly difficult, it can bring a perspective to life that many may miss.

The film crew is launching a Kickstarter campaign from February 15th – March 18th to raise funds to begin production, so the film can be made with the quality that will attract the largest audience. If you’d like to contribute and follow the progress of the campaign, visit www.whenthelotusblooms.com.

The filmmakers would love to hear your story or anything else you want to contact them about. You can email [email protected] for more information. To tag along on their filmmaking journey, follow @LotusBloomsFilm on Twitter and @whenthelotusblooms on Facebook and Instagram. There, you can read and share stories from families, get updates on production and more. The filmmakers are so grateful and honored to be an ally for the SRNA community.