by Kevin Dicciani
Tristan Hall was 3½ years old when he first lost consciousness and fainted. His mother, Sandy, immediately took him to the doctors, who diagnosed Tristan, and her, with long QT syndrome.
Long QT syndrome is an inherited heart rhythm condition that causes fast, chaotic heartbeats. The rare condition can trigger a seizure or a fainting spell and, in some cases, if the heart is beating frantically for too long of a time, sudden death. In the United States, it is estimated that one in every 2,500 to 7,000 people are afflicted with the disorder, and 4,000 young adults die each year without ever having been diagnosed.
The disorder is treatable with medicine, typically beta-blockers, which Tristan, now 15, and Sandy have been taking since their diagnosis. Because they were fortunate enough to get diagnosed and treated for the disorder, the two of them made it a point to bring awareness to others who may carry the condition unknowingly, like Sandy did for the greater part of her life.
To raise awareness of the disorder, Sandy turned to music. Sandy, a registered nurse, and her husband, Chris, own and operate the North Ridge Music School in Roxborough. Sandy is the lead singer of Kick It Out, a Heart tribute band, and Tristan plays the guitar. It was a natural decision, then, that the Halls decided to raise awareness for long QT syndrome through a benefit concert, the first of which took place last year at the Venetian Club in Chestnut Hill.
Sandy and her band performed onstage last year, as did Tristan. Other musical acts included international recording artist Dan Reed, whose former band, The Dan Reed Network, opened for The Rolling Stones, Bon Jovi and David Bowie in the ’80s. Mark Evans, formerly of the band Heaven’s Edge, also performed a set.
Sandy said the event was such a success that she decided to do it again this year.
“Music is so powerful,” Sandy said. “I’m trying to raise awareness of long QT syndrome through music because the awareness reaches a whole different demographic that it might not be able to without it. It has the ability to connect people.”
The benefit concert will take place from 6 to 10 p.m. Thursday, Oct. 30, at the Side Room/Cornerstone Inn, at 6080 Ridge Ave in Roxborough. Dan Reed and Mark Evans will be returning to perform acoustic songs. Sandy, Chris, Tristan and her daughter Mariah will also perform, as well as children from the North Ridge Music School. All proceeds will go to Simon’s Fund, a local organization dedicated to a local boy named Simon who died of long QT syndrome.
Sandy said it is the personal mission of her family to raise awareness of the disorder, as she has seen the trauma it can cause firsthand.
“It’s a frightening disorder,” Sandy said. “We are very lucky our son survived that episode. Not everyone does, and not because it’s not treatable, but because many people don’t even know it exists. The idea is to be aware. Those undiagnosed are the ones at risk.”
The concert, Sandy hopes, will provide the necessary education on how to help and protect those affected by the disorder. It will also be a way for those families affected by the disorder to network with others who are going through the same ordeal. Many times, Sandy said, families feel isolated and silenced by the disorder because of its rarity.
“I know I wish I had someone to talk to,” Sandy said about first learning of her and Tristan’s diagnosis. “Often, though, people in a crisis mode don’t think to reach out to others. They feel trapped in the moment and are unsure what to do or who to even reach out to. This event gives people the opportunity to come out and network with others and share their stories.”
Sandy and her family hope to continue their mission to raise awareness about long QT syndrome far into the future. For her, she said, it is crucial to continue the discussion, spread the word and comfort those in need.
“We hope, and need, to keep the momentum going with long QT syndrome,” Sandy said. “The more people that know about it, the more lives can be saved.”