SCARBOROUGH, Maine — Kyle St. Clair — a Scarborough boy whose mysterious ailments largely confined him to his bedroom and hospitals, but whose story became an inspiration to thousands — died Tuesday morning at the age of 8, according to his family.
St. Clair, who earlier in 2012 confessed to his sister he didn’t think he would survive to see his eighth birthday, reached the milestone on Oct. 27, and then lived to spend one more Christmas and New Year’s Day with his family.
On Tuesday, the boy’s family posted the following on a Facebook page devoted to Kyle: “After 8-plus years of fighting, our love doesn’t need to fight anymore. Kyle William St. Clair passed away here, at home, this morning with his family by his side. We can’t say enough about what joy this boy has brought to us in his short time on Earth. So much love. Thank you to all for the support you have given to him and to us.”
Kyle St. Clair’s story was chronicled in a piece published by the Bangor Daily News on Nov. 2.
St. Clair was born prematurely in 2004 and spent more than seven years in different hospitals around the eastern United States, as a range of specialists treated a cascading list of ailments which restricted his breathing and digestion.
Mysteriously, the boy’s digestive tract worked in reverse, confounding doctors, who never did provide a definitive diagnosis of the underlying problem, Kyle’s parents told the BDN in early November. That reverse motility drove dangerous digestive acids back up through organs such as his lungs and esophagus, effectively destroying them.
Over the course of more than 50 surgeries, doctors replaced most of his internal organs with plastic, external stand-ins to keep him alive. Tubes connected to sacks and medical equipment extended from his torso. A feeding tube provided nutrients, as his throat no longer connected to anything but another tube leading out of his body.
Kyle needed a new set of lungs, stomach, bowel, intestines, liver and esophagus, and specialists who treated him ultimately determined he would never be able to withstand such a dramatic overhaul.
But while Kyle St. Clair was never able to eat a morsel of food, he was credited with inspiring thousands during his short life.
A website and Facebook pages chronicling his good days and bad days were set up by his mother, Kate St. Clair, and the sites went viral. Nearly 11,000 people began following Kyle through the most recent and regularly updated Facebook page, titled “Team Kyle.”
Many followers sent Kyle notes saying his battle inspired them in the face of their own medical ailments. The boy received more than 500 birthday cards from strangers all over the world when he reached the eighth birthday he once considered out of reach.
Through those online networks, Kate and father Mark St. Clair, helped Kyle organize multiple charity efforts, including the sale of bracelets and T-shirts to benefit institutions such as the Barbara Bush Children’s Hospital at Maine Medical Center and Angel Flight Northeast, among others.
Perhaps the most original of Kyle’s projects involved distributing about 400 small cards reading “Live for today” on the front and urging the finder to do something nice for another person before passing it along. The “pay-it-forward” cards were scattered all across the country by friends and supporters, and emails began coming back to the St. Clairs from card-receiving kids who had started lemonade stands to benefit local charities or adults who simply paid the coffee tab for the stranger in line behind them one morning.
Kyle’s baffling ailments and his efforts to spread acts of kindness made him a kind of local and Internet celebrity, even as he was requiring powerful drugs hourly to withstand the pain of his ravaged internal organs.
The boy was made an honorary member of the Scarborough High School football team, whose members frequently visited him at his home and played games with him.
Local establishments, such as the restaurant Anjon’s, held fundraisers to both help the St. Clair family pay for medical expenses and to donate to their favored causes.
Over the first four hours since the St. Clairs posted news of Kyle’s death on their Team Kyle Facebook page, more than 1,700 comments of reaction were posted by followers.
When the St. Clairs moved Kyle back to Scarborough in February 2012 after the last of his many surgeries in Ohio, doctors gave the boy four days to live, his mother said.
On Jan. 1, nearly a year later, his family posted that his health had taken a downturn and that they had to double many of his medications to compensate, but that he vowed to fight on. On Tuesday, they posted that he had passed away, at home, and surrounded by family.