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TompkinsWeekly – Williams syndrome film to feature Lansing family

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Over a decade ago, Lansing resident Cheryl Willer — who lived in Dryden at the time — became a certified foster parent, and her first placement was her now-adopted son Jeremiah, who has Williams syndrome (WS).

Later, at a camp in Michigan for kids with WS, a mom told Cheryl about a prayer group that was created for the parents of kids with WS, and Cheryl decided to join. That prayer group eventually led to her taking in another child with WS, Abbie.

“The foster parents who had Abbie at the time posted that Abbie was going to be free for adoption — ‘Was there anybody in the Williams community that would be interested in adoption?’ And I jumped all over that,” Cheryl said. “We were like, ‘Oh, absolutely, we would love to do that.’”

Almost 10 years later, Cheryl and husband Jim couldn’t be happier taking care of two kids with WS, and their story will be included in an upcoming documentary on families who have members with WS.

WS is a genetic condition present at birth that affects one in every 10,000 to 20,000 people in the U.S. According to the national group William Syndrome Association, it “is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges.” But WS also brings with it some positive side effects, as those with WS often have “striking verbal abilities, highly social personalities, and an affinity for music,” according to the association.

The upcoming documentary called “Truelove: The Film” chronicles the journey of a teenage girl with WS, Callie Truelove, as she travels around the country to meet other families affected by WS. The film is being produced by Former Prodigy Media, a production company created by TV and film aficionados Phil Viardo and Christopher Knight, who famously played Peter Brady in the sitcom “The Brady Bunch,” which ran from 1969 to 1974.

As Viardo and Knight explained, the inspiration for “Truelove” came well before the pandemic, when one of Viardo’s coworkers had him watch a YouTube video featuring an interview with Truelove. Viardo said he didn’t know about WS at the time, but “all I knew is that I couldn’t stop watching this girl.”

“One of the things that we learned in the interview is that one of the side effects of this genetic condition is their inability to process negativity and the bad in the world,” Viardo said. “So, in essence, all they see is beauty. All they see is love. And that’s how they treat everyone around them, no matter who you are.”

And once Viardo realized the girl’s name was Truelove, he said, “This is a story that needs to be seen.” And so, over the next few years, he worked to turn it into a TV show. But the media landscape changed, making the market oversaturated with reality TV shows, so Viardo worked with Knight to shift instead to making “Truelove” a documentary.

Production started before the pandemic hit but had to come to a screeching halt in mid-March of 2020. And production didn’t pick back up until last month when the crew and adult family members were finally fully vaccinated and there was “a light at the end of the tunnel,” as Viardo described. Knight explained that while the pandemic put things on pause, their motivation never wavered.

“The arc of the last four years, eight years, whatever it’s been, has not been one that, in my mind, paints a positive picture of humanity,” he said. “We’re at each other’s throats, there’s great division, and it really starts with self. There seems to be an erosion of care for my brother. And clearly juxtaposed to that is this feeling we get when being in Callie’s wake, which is you can’t do enough for your brother.”

But Knight and Viardo wanted to do more than just tell Truelove’s story; they wanted to include the stories of others with WS to help give a clearer picture of what WS is and spread awareness of the condition.

“Each one of the individuals of Williams is an individual,” Viardo said. “They have similar traits, yes — some of them have similar hardships and experiences and challenges — but they’re all different. And so, as filmmakers, our job is to paint as much of a complete picture as we can.”

Participants and crew of the “Truelove” documentary gather in front of the bus that carries Callie Truelove, the main subject of the documentary, to other families who have members with Williams syndrome. Photo provided.

And that’s where the Willers come in. Viardo and Knight met Cheryl and her family through the Williams Syndrome Association and were touched by her story.

“Cheryl and Jim, just fantastic people,” Viardo said. “They are just givers and they give of themselves, and they will tell you themselves that no matter how much they give, what they get back is so much more. And it’s stories like those that we want to tell because, get your Kleenexes out, this film is going to have it all.”

Viardo’s sentiment was very much echoed by Cheryl.

“In a heartbeat, if we found out there was another child with Williams syndrome that was in foster care, we would go,” she said. “We’re comfortable with the diagnosis. It’s a very happy place here most of the time, and we’ve been very blessed.”

Both Jeremiah and Abbie are bright, happy kids who love interacting with and meeting new people.

Jeremiah loves music, especially singing and drumming, and Abbie loves everything fashion. And their perpetual happiness and optimism can melt the hearts of everyone around them, as Jim explained.

“There are moments, like when Jeremiah did something in school that was inappropriate, and they called and said, ‘What do you want us to do?’” he said. “Well, what would you do for another child? … If he knows he’s done wrong, then he should be held accountable for that.”

Raising two kids with WS comes with its fair share of challenges, like making sure they have all the resources they need at school to have the most educational and fulfilling experience possible. This often means having numerous calls with teachers about the best ways to teach kids with WS, Cheryl said.

“Our other challenge for that is the stranger danger,” she said. “They have been very much told that they may not answer the door at our other house. They would go out, and if you came [over], they would have no problem coming out, and they would get in the car with you and go anywhere. So I think that is just always being alert to make sure that there’s supervision at all times with them.”

But still, the Willers cherish their time with one another, and that’s been even more true during the pandemic. While Cheryl did describe some challenges with things like at-home schooling, she said it’s been a “blessing” for the family as a whole.

“We had more family time,” she said. “We’ve been able to eat more meals, like we not only now eat dinner together, we eat lunch together. So, there’s been some time just to work on life skills without laundry and dishes and things like that. So, it’s been a little challenging, but it’s also been a really great blessing too.”

And being a part of “Truelove” has been another bright spot for the Willers. As Cheryl explained, Abbie and Jeremiah jumped at the chance to be included as one of Truelove’s stops.

“They’ve been telling everybody they’re going to be movie stars,” Cheryl said. “So, it’s been fun. Getting prepared is a little on the stressful side. But I think it’s really exciting.”

Cheryl said that she and Jim decided to say “yes” when Viardo reached out because they shared his goal of spreading awareness of WS, which is still not talked about much by the general population. As Cheryl said, “We want that community and that unity of being able to help each other out and support each other.”

And another big piece is spreading the awareness of the foster system.

“I think there’s just a lot of positives that can come out of that,” Cheryl said. “Since we’ve been in the special ed process of that, we’ve learned a lot, and we want to give back, so I think that’s really our big thing is being able to give back to other people.”

The film is currently scheduled to be shown at film festivals this fall, with wide release set for early- to mid-2022. Visit truelovethefilm.com to learn more about the project and to donate to the Truelove family

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