Winston’s first surgery was immediately after he was born and his next one is scheduled in January, when doctors will sew up a split that has opened in his tongue.
There will have been 18 other operations and treatments in between for the 9-year-old Weatherby Lake fourth-grader who has a congenital condition known as lymphangioma. Oversimplified, that means benign masses growing in his neck and head, affecting his ability to eat and speak.
And that means over $1 million in medical bills so far, more than even his mother, a well-known interior designer with a TV show, can manage.
“It’s just hard, no matter how hard you work,” Jennifer Bertrand said Thursday morning from Chicago, where she is working on a Ronald McDonald House project and other jobs. She had driven a U-Haul all night to get there.
So friends of the Bertrands this week established a GoFundMe page to help with Winston’s medical needs. “Winston’s Warriors” had just crossed $6,000 on Thursday afternoon, toward a $250,000 goal.
“We cannot sit back and watch this family suffer and worry about this financial burden on their own any longer,” wrote Krista Biel-Eliason, who set up the fundraiser.
Jennifer Bertrand, who formerly taught art at Cottonwood Point Elementary, burst on the scene by winning HGTV’s “Design Star’’ reality competition show in 2008, helping her build a career both locally and nationally. She found out she was pregnant two days before winning the show. Her prize — the HGTV show “Paint Over” — ran for five episodes.
She has since regularly appeared at home shows and is a designer on the Lifetime channel’s show “Military Makeover” with Montel Williams while stay-at-home dad, Chris Bertrand, tends to Winston.
Winston was one of several children with facial anomalies featured in a 2016 “Just Like You” documentary promoting understanding and acceptance of people who are born different.
“It’s hard to go through so many surgeries,” Winston says in the documentary. “It hurts a lot.”
He is a resilient boy, but still cries when he knows he’s facing another operation.
Winston’s parents encourage an outlook on life in which his condition is his superpower: The power to be unique.
“Everybody strives to be different,” Jennifer Bertrand says. “He got a head start.”
In the film, Winston says his lymphangioma “makes me my amazing self.”
People sometimes stare at children with facial anomalies or make a point of seeming not to notice them, when the best thing to do is make eye contact and smile.
“A lady smiled at me at the grocery store,” Winston says in the film. “That made me feel great.”
Chris Bertrand had to resuscitate his son when he was just five months old. During the first four years of Winston’s life, family and friends helped the young couple.
They lost their Olathe house in 2009, under pressure from the bills and the recession, but family members bought them one in Weatherby Lake. The Bertrands hope to pay them back one day.
That same year, a seasoned marathon runner formerly of Lee’s Summit raised $10,000 for Winston; high school students sold “Winston’s Warriors” T-shirts.
There was a period between medical emergencies “when we got to stop and be human,” Jennifer Bertrand said. “Unfortunately, we’re going to have another round.”
There was a trip to the emergency room on Monday when a split opened in Winston’s tongue. That will require a trip to New York on Jan. 4 for repairs. Jennifer posted a video of the split on her Facebook page, for those who are not faint of heart.
Next, Winston’s jaw will need to be realigned and his chin will need to be “shaved down.”
Jennifer Bertrand had resisted efforts by friends to set up a GoFundMe account.
“I don’t want to seem like a taker in life,” she said. “There are people who are worse off. But sometimes when there are surgeries you have to learn to accept help. It’s very humbling. I’m very thankful.”