By Katie Moritz
The Sell family, or what Wendy Sell describes as “the Triangle,” sit together in their living room of their Barre home. A fire keeps the room warm, and what appears to be a Beatles concert plays on a large TV in the background. John and Wendy Sell are excited to share their story, and their son, Christian, who sits facing the TV, smiles along
with us, occasionally commenting on our conversation.
They’re “the Triangle” right now because Justin Sell, Christian’s brother and Wendy and John’s youngest son, now lives in Boston. When he’s home, the family unit becomes “the Square.”
“We’re big music people. Huge music people,” John Sell laughs, and gestures back towards the concert playing out on the TV behind him.Which makes sense, seeing that John and Wendy are putting on a concert fundraiser on May 5. The performers are 1964 The Tribute, a nationally known Beatles tribute band that has a solid following around New England. Money raised from the event will go to the Mowat-Wilson Syndrome Foundation, which furthers research and awareness. But what does Beatles music have to do with Mowat-Wilson Syndrome, a disorder so rare, that, according to John Sell, there are less than one thousand officially known diagnoses.
It all started in 1997, when “the Square” attended their first 1964 Tribute concert. The family loved the Beatles, and when the 1964 The Tribute band came back for a second time later that year, they decided to attend that as well. And that’s where the magic began. Their son, Christian, had yet to be diagnosed with Mowat-Wilson Syndrome, a disorder characterized by developmental delays, seizures, and many other health concerns. And although the Sell family did not know why Christian experienced a host of physical difficulties, they did know one thing for sure: he, like the rest of them, loved music.
Wendy Sell is visually impaired and Christian, then age six, needed to be close to the stage. At this second concert, Paul, waved to Christian during the show. Christian was so happy about it,that for the next three days, he walked around repeating: “Paul, he waved to me!”
John Sell contacted the band and explained how much that wave had meant to Christian. The band not only responded, they sent the boys a bunch of goodies, including t-shirts. When the family attended the next concert, they notified the band that they would be attending headof time and, yes, you guessed it: Paul waved again. And it became athing.
Every concert the Sell family attended, Paul would wave to Christian. Then, in 2009, that particular Paul passed away. Over the following years, different Pauls would rotate in and out of the band. But every single one waved to Christian.
In June of 2015, Christian was diagnosed with Mowat-Wilson Syndrome at the age of twenty-three. Unlike many individuals diagnosed withMowat-Wilson Syndrome, Christian, along with, according to his father,close to ten other young people, speak. Many are now diagnosed as babies. John estimates that close to 95% of diagnoses are as infants, and explains that Dr. Mowat and Dr. Wilson, who the syndrome is named after, can now almost make a diagnosis off appearance alone.Wendy Sell explains that “If we hadn’t been so persistent, we may not have gotten the diagnosis.”
John and Wendy look at each other and smile, knowingly.“We’re very blessed that Christian has Mowat-Wilson,” John explains.“Kids who have it are happy and socially appropriately happy. Everybody who meets us, that’s one of the first things they remark on: how happy he is.”
John and Wendy Sell became involved with the Mowat-Wilson Syndrome Foundation as board members after attending a conference last summer in Washington D.C.
“It was crazy incredible. It was life changing,” Wendy sighs. “Because there were similarities with all the kids, it was like going to a family reunion. We all felt close even though we may have only met online. And the Facebook support page is amazing.”With a condition so rare that Christian is the only diagnosed personin the state of Vermont, the Sells want to do more to spread awareness and raise funds.
When John Sells asks Christian who is coming to his party, Christian replies with a wide grin, “Everybody!”
Wendy and John hope he is right. Wendy, who has been a paraeducatorfor eighteen years, and John, who is a network administrator at the Barre Town School, hope that their community will come together to show support. John explains that “A lot of people, even people we’reclose to, don’t know much about Mowat-Wilson syndrome. We hope, that by reaching out to the community and talking to folks, that we’ll be able to spread awareness.”
According to Rolling Stone magazine, 1964 is said to be “the best Beatles tribute on Earth.” But it’s more than their talent that keeps the family coming back to their concerts. It’s the connection the band members have made with Christian. “The guys really understandChristian,” John explains. “They respect him and treat him like a family member.”Because of this, the Sell family has attended a total of fifty – yes, fifty! – 1964 Tribute shows over the past twenty-one years. And on May 5th, they will attend their fifty-first and hope to raise significant funds to further research on MWS. Tickets are $45 and doors open at 6:15PM. The toast portion of theevent will be a cash bar. For more information on MWS:https://mowat-wilson.org/. More info on the Tribute band, visitwww.1964web.com. For tickets, call: (802) 476-8188 or visit the BarreOpera House. For additional information, contact John and Wendy Sell at John.firstname.lastname@example.org.