A rare disease that robs children of the crucial younger years of their life was the focus of a documentary that premiered in Chatham recently.
‘Stolen Childhood’ was presented at the Capitol Theatre on Saturday, offering an emotional glimpse into the day-to-day existence for families dealing with PANDAS (pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections).
The often-misdiagnosed disease is a misdirected immune response that can cause abrupt reactions, including the onset of sudden obsessive-compulsive disorder, motor or vocal tics, behavioural regression, rage, eating problems, and sometimes even suicidal thoughts.
Jennifer Davis, of Thamesville, associate producer for the film, has two sons with PANDAS and was featured on-screen.
Crediting a friend for helping her get involved, she said working on the documentary was a “surreal” experience, but something she knew she had to be a part of.
She also believes it was therapeutic to speak with other families facing the same challenges.
“It’s been difficult at times, but pure joy at other times meeting with other families,” Davis said after a panel discussion that preceded the showing.
“I don’t even know how to put it into words, honestly.”
The documentary team travelled throughout Canada, visiting Chatham-Kent, Vancouver and Halifax, interviewing families, doctors, therapists and researchers.
In the film, families discuss feeling helpless while watching their children undergo often horrific symptoms.
This helplessness was compounded for them by those in the medical community who didn’t wish to even consider PANDAS as a cause.
Approximately 300 people attended Saturday’s event. Davis said the aim is to raise as much awareness as possible.
“The plan is for it to go global,” she said. “It’s a big deal.”
Dr. Wendy Edwards, of Chatham, was one of the panellists. She said there is a greater need for education on the topic in order to foster more understanding.
“(It’s) the power behind everybody and being able to change some minds,” she said.
Novaturient Productions partnered with PANDAS/PANS Ontario and PANDAS Canada for the film.
The documentary crew volunteered their time and resources in making the documentary.
“To me, that speaks louder than words. This crew has seen the struggle these children and families go through – they see the pain. They want to make a difference. They want to help,” said co-producer Sara Van Vugt in a media release.
Christina Magnoli, also a co-producer, said, “If by spreading awareness about PANDAS through a documentary could help even one child to not have to deal with the pain that it causes, then this documentary will count as a major success in my books.”
For more information on ‘Stolen Childhood,’ visit: stolenchildhood.ca or email info@stolenchildhood.ca
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