Documentary to explore little-known children’s disorder

Tyler and Ashley Smith are helping a Sarnia-based organization dedicated to raising awareness about a little-known children’s disorder. Cathy Dobson

Sarnia’s Tyler Smith was astonished the first time he watched Stolen Childhood, a documentary about children living with the auto-immune disorder known as PANDAS/PANS.

He and wife Ashley have a six-year-old daughter diagnosed with the disorder, and they identified strongly with the heartbreak and hope portrayed in the award-winning film.

Stolen Childhood, directed and co-produced by Christina Magnoli and Sara Van Vugt, features eight families coping with PANDAS/PANS, including some from Sarnia.

The documentary premiered last year in Chatham-Kent and the Smiths were determined to find a way to bring it to Sarnia.

The disorder is not widely known or understood, either by the general population or medical community, says Smith.

So he and Ashley, owners of The Woods Hair Salon on London Road, teamed up with PANDAS/PANS, founded by Sarnia resident Kerry Henrikson, to present Stolen Childhood at the Imperial Theatre on Oct. 10.

The evening begins at 6 p.m. with a silent auction, cocktails and music from Sarnia’s Matt Weed. The film begins at 7:30 p.m., followed by a question-and-answer period with Henrikson, Magnoli, Van Vugt, and Dr. Wendy Edwards.

It was Edwards, a Chatham-Kent pediatrician, who finally diagnosed the Smiths’ daughter and treated her.

“Dr. Edwards was our light at the end of the tunnel,” said Smith.

Stella Smith was just shy of her fourth birthday when she suddenly transformed from a perfectly healthy little girl into one with serious behavioural problems.

In just one week, she developed severe anxiety, stuttering and emotional breakdowns that saw her rub her head on the floor until it bled.

Her distressed parents took her to doctors and behavioural specialists, but none could help.  When they heard about PANDAS/PANS, they realized many of her symptoms fit and contacted Dr. Edwards’s office.

“We were told there is a three-year wait list,” Smith said.

Their persistence was rewarded, however, and the doctor saw Stella in months. She had 11 of the 13 markers for the disorder and tested positive for strep. The doctor immediately began antibiotic treatment.

As with other children, simple antibiotics made a dramatic difference.

PANDAS/PANS is a childhood autoimmune condition that occurs after exposure to an infectious trigger. Instead of attacking the bacteria, the immune system attacks healthy brain tissue and causes symptoms such as OCD, anxiety, oppositional behaviour, tics and other body movements.

It’s little understood and few doctors recognize or know about it, so education and awareness is key, said Smith.

That’s one reason the Oct. 10 event is important to him.  Not only will the film educate, it’s hoped the silent auction will raise money for Henrikson’s PANDAS/PANS Ontario non-profit.

“When we thought Stella might have PANDAS/PANS we met Kerry and she helped us a lot,” Smith said.  “When I saw Stolen Childhood, it was amazing to see other families going through the same things we’ve been through.”

“We really want to raise awareness and help others who may be going through it,” said Ashley Smith.  “Stella is better than she’s been and she had a really good month in August.”

But returning to school this fall has been a challenge whenever a classmate has an infection. Stella improves and then has setbacks. However, generally, a regular antibiotic regime is keeping her healthier.

“She is healing and becoming stronger,” said Ashley.

For more on the disorder visit www.pandaspansontario.org.

The Smiths are also planning another awareness and fundraising event featuring country singer Eric Ethridge.  That event will be at The Woods Hair Salon on Nov. 9. Call 519-491-6895 for details.

IF YOU GO:

WHAT:  Sarnia premiere of Stolen Childhood, a documentary about PANDAS/PANS.

WHEN: Thursday, Oct. 10.  Silent auction, live music, cocktails at 6 p.m. Film at 7:30 p.m.

WHERE: Imperial Theatre

TICKETS:  $15 at theatre, 168 Christina St. N. Call 519-344-7469, or online at www.imperialtheatre.net.

 

Send your ideas for the Arts Journal to

cathy.dobson@thesarniajournal.ca.