Tristan Wiesing gets a special message from Sia, Eric Stonestreet
Tristan Wiesing flew from Kansas to Boston on Monday aboard a private jet owned by the founder of the Jimmy John’s sandwich chain.
Chew on that for a second.
While you do, add these ingredients to Tristan’s tale: Eric Stonestreet, superstar singer Sia and Samuel Nurko of Boston Children’s Hospital, the doctor whose work was featured last year in the movie “Miracles from Heaven.”
Nineteen-year-old Tristan of Overland Park was born with cerebral palsy. He cannot speak, he cannot walk on his own. He also suffers from gastrointestinal problems so debilitating that he, his father and grandfather flew to Boston looking for a medical miracle from Nurko.
Tristan’s dad is stunned by the famous people who got them there.
“There are still good people out there who aren’t in it for themselves,” Wiesing said from Boston on Monday. “There are good people out there who see the need in others and put their hand out there to help them.”
Stonestreet introduced the world to his buddy Tristan with an Instagram post on Monday.
The “Modern Family” star met Tristan at Children’s Mercy last summer when he was in town for the annual Big Slick charity event.
“Eric came around to the second floor, and it just happened that Tristan’s was one of the rooms he visited,” said Wiesing, a mechanic at Lee’s Summit Dodge.
Something about Tristan seemed to make an impression on the actor, said Wiesing, who is grateful for the bond the two have forged.
Stonestreet, who was with “Parks and Recreation” actor Adam Scott, played “Chandelier” by Sia song on his iPad while they danced and goofed around with Tristan.
“Tristan knows no strangers, but it was just amazing to see the smile on his face when Eric was in there,” he said.
When Tristan wound up back in the hospital a few months later, Children’s Mercy contacted Stonestreet because he had wanted to buy Tristan an upgraded subscription to the Internet radio service Pandora.
Within a couple of days, Wiesing received an email from Stonestreet and a video of the actor singing the Sia song he sang for Tristan when they first met.
Stonestreet added a surprise at the end of the video: a personal greeting from Sia herself, unmasked, a rare glimpse of her face in plain sight. The Australian singer is almost never seen in public without trademark wigs and hats hiding her face.
“Tristan, it’s me, Sia,” she says in the video. “This is what my face looks like. I’m in bed, on an airplane. We just landed ... I’m a lucky duck. I got to sleep on the plane.
“Eric told me that you’re a very nice person, and I wanted to say hello and send you lots and lots of love, and a big kiss.”
Stonestreet stayed in touch with Tristan and his family, sending a video birthday greeting and birthday presents to Tristan. The teen has spent weeks, even months, at a time at Children’s Mercy. He hasn’t eaten normally in three years because of what his dad calls his “gut” issues; Tristan is fed intravenously.
He wears an ostomy bag that collects his bodily waste. He doesn’t walk. He needs tendon surgery that would help unlock his tight limbs and allow him a greater range of motion. But he can’t have the surgery because of his gastrointenstinal problems, Wiesing said. So Tristan, all 97 slim pounds of him, uses a wheelchair.
Children’s Mercy, Wiesing said, encouraged him to get a second opinion about Tristan’s digestive problems. Wiesing got shot down by two other hospitals, then latched on to a long shot.
He saw the Jennifer Garner movie “Miracles from Heaven,” based on the true story of a little Texas girl named Annabel Beam who suffered from excruciating stomach pains.
When doctors at home couldn’t find the cause, her family took her to Boston to see Nurko for a second opinion in 2009.
Nurko specializes in gastroenterology, hepatology and nutrition at Boston Children’s Hospital, and heads the Center for Motility and Functional Gastrointestinal Disorders.
According to the Boston Globe, Nurko sees some of the sickest children in the nation. He diagnosed Annabel with a rare and incurable digestive disorder.
“If anybody can cure Tristan I think Dr. Nurko will be the one,” he said.
Enter Stonestreet. Wiesing revealed the actor quietly pulled some strings to get Tristan an appointment with Nurko. But getting to Boston was another challenge.
Traveling with Tristan and his many bags of medical equipment is not easy. Wiesing, who is divorced from Tristan’s mother, wanted to take Tristan’s grandfather along to help.
He worried about what would happen if something went medically wrong on a commercial flight. Or what if Tristan’s ostomy bag fell off on the plane? And the cost of three tickets to Boston?
His medical insurance wouldn’t help, neither could a charitable medical transportation operation he contacted.
He set up a GoFundMe page called Tristan’s Medical Travel Expenses, and three days later someone made an anonymous $5,000 donation. Wiesing thinks he knew who it was.
Two weeks ago Stonestreet was in Florida with Jimmy John Liautaud, founder of Jimmy John’s, and happened to mention the problem of getting Tristan to Boston.
Liautaud told him not to worry. I’ll send my plane to get them and take them to Boston, he told Stonestreet.
Just. Like. That.
“The good Lord is up there watching over us,” said Wiesing.
Tristan, his dad and grandfather, Ed Wiesing, left for Boston from Gardner on Monday morning. They flew on Liautaud’s six-seat Leer jet. Nice leather seats. Nicer crew.
Wiesing noticed the plane’s tail number, N25UB. The “5” looked like an “S” — N2SUB.
A private assistant served them breakfast on the plane.
“Believe it or not, we were on Jimmy John’s plane, and we had Einstein’s bagels,” Wiesing said, laughing.
Tristan had his first appointment with Nurko on Monday. The family planned to return to Kansas City by Thursday, but those plans are fluid because Nurko might want to spend more time with Tristan.
The Jimmy John’s folks have told them not to worry.
That Leer jet and crew are in Boston with them for as long as necessary.