Allison Williams, star of “Peter Pan Live.” Photo by Nino Munoz/NBC
If last year’s “The Sound of Music Live” broadcast was any indication, then this year’s “Peter Pan Live,” a special airing Thursday night on NBC, could draw more than 40 million TV viewers. And among those glued to their screens will be North Carolina residents Theresa Pauca and her son Victor, a cherubic 9-year-old with a rare form of autism called Pitt-Hopkins syndrome. The condition may have been shared by an 18th-century boy thought to have inspired author J.M. Barrie’s “Peter Pan” — making the beloved character the default poster child for the Paucas, and for kids with Pitt-Hopkins everywhere.
“Victor is never going to have to grow up. He will be just like Peter Pan, and we will get to be with him in Neverland,” Theresa tells Yahoo Parenting, reiterating what she told her daughters, then 5 and 8, when Victor received his diagnosis at the age of 2. It was a fairly accurate description of Pitt-Hopkins, characterized by severe intellectual and developmental delays, little to no verbal skills, and a joyous demeanor.
But Theresa’s explanation of Victor’s diagnosis also turned out to be a prescient one: In 2011, the joint efforts of a British historian and a geneticist concluded that Peter the Wild Boy — the abandoned child found wandering naked in a German forest and kept as a “pet” in the courts of King George I and II, and whom some scholars believe was the inspiration behind Barrie’s Peter Pan character — had Pitt-Hopkins syndrome.
Victor Pauca. Photo by Olivia Surgnier/Fried Bananas Photography
The boy’s charming smile, seen in a 1720s portrait painted by William Kent on the king’s grand staircase in Kensington Palace, was the clue for Lucy Worsley, a historian at Historic Royal Palaces who had been researching Peter’s life. She suspected, from various accounts, that he was autistic, so she consulted with Phil Beale, a professor of genetics at the Institute of Child Health, according to the Guardian. Through his database of chromosomal disorders, Beale settled on a diagnosis of Pitt-Hopkins syndrome — first identified in 1978, in Australia, and eventually tied to a specific gene, Chromosome 18, in 2007.
His first clue in the portrait was the curvy bow shape of Peter’s lips — a Pitt-Hopkins hallmark — along with his short stature, coarse hair and drooping eyelids, and accounts noting that the boy had two fingers fused together, another symptom of the syndrome. Plus, Worsley concluded, it would have made sense that his mental development was delayed, given how he was treated and characterized.
“The phrase ‘wild boy’ makes me a little sick to my stomach,” admits Audrey Davidow Lapidus, cofounder, along with Theresa, of the Pitt Hopkins Research Foundation. Lapidus is also mother to Calvin, 3 1/2, who has the rare syndrome — of which there are only about 500 known cases in the world. “We call him ‘gentle Peter.’ I love how he charmed the court, and would do things that others wouldn’t do…not caring about social mores.”
Audrey, who lives in Los Angeles, explains how the family’s “medical odyssey” to get to the root of Calvin’s issues began at 8 months, when they noticed he wasn’t reaching his developmental milestones. He received his Pitt-Hopkins diagnosis shortly after turning a year old, and Audrey, a former journalist, began researching the syndrome online. That’s where she found what little there was to find: a Netherlands support group, and a story about Victor and the communication-aid app, “Verbal Victor,” created by his computer science professor dad, Paul. She reached out to Theresa, a former special-education teacher, and the two joined forces to create the foundation, which works to raise awareness and funding for research.
Photo by Olivia Surgnier/Fried Bananas Photography
Today Calvin cannot walk or crawl, and has no functional speech. “A word here or there is what a lot of us hope for,” Audrey says, explaining, “I’ll be changing his diapers when he’s 30 — unless of course our research pans out.” Other medical characteristics of the syndrome include breathing problems, seizures, difficulty walking, and gastrointestinal issues, the last of which plague Calvin. “The hardest is the day-to-day of seeing him uncomfortable or in pain, and not being able to verbalize what’s wrong.”
Victor also does not speak, says Theresa, and is “like a 2 ½-year-old” developmentally. He walks but cannot run, due to a wobbly gait, and attends a special-education school where they live, in Winston-Salem. But, she adds, “Victor has the most delightful personality. He thinks life is one big party and that everything’s a toy. He has never grown up — he has that beautiful innocence.”
So it all made sense to her when, earlier this fall, she learned about the newly released historic novel, “Peter: The Untold True Story,” by Christopher Mechling. “Deducing the origins of any fictional character is part science and part art. I do believe Peter the Wild Boy was the inspiration for Peter Pan,” Mechling tells Yahoo Parenting. “I spent several years studying my subject as well as I could and wrote my novel to share with readers what I saw in the life of Peter the Wild Boy, a feral child who became a legend in 18th-century England. To me, the idea that there was once a real-life Peter Pan is electrifying, and offers an opportunity to reexamine what are some of the most poignant and moving aspects of the legend of Peter.”
The theory that Barrie drew inspiration from the tale of Peter the Wild Boy both makes sense and brings comfort to Theresa.
“To have Peter Pan, one of the most cherished characters of children’s literature, be inspired by our beautiful children is almost too good to be true,” she says, noting that the famous imp is the closest thing they have to a celebrity face of Pitt-Hopkins. She and her family have a watching party planned for Thursday night’s broadcast, starring Allison Williams.
“I love the story,” Audrey adds, “and how never growing up makes us realize that perhaps there are some blessings in remaining childlike.”