ESTEVAN – The community of Estevan came together in an extraordinary show of support for 13-year-old Elizabeth Trepanier, raising thousands of dollars at a Feb. 1 fundraiser at the Wylie-Mitchell Hall.
Elizabeth has been battling Superior Mesenteric Artery Syndrome (SMAS) since 2022, a rare and debilitating gastrointestinal disorder that has left her in chronic pain, severely impacted her quality of life and is a serious life-threatening condition.
The event, aiming to help the family with medical expenses, was organized in just two weeks, drew more than 400 people and saw an outpouring of generosity from local businesses, friends and strangers alike.
"Right from the start, I had support from every direction," said Meghan Schiestel, Elizabeth's mother. "Everybody kept pushing and pushing for me to get a fundraiser going. I kept saying no for about a year, but once I finally said yes, they already had everything lined up."
The event featured both silent and live auctions. Handmade charms and individualized bracelets, as well as homemade baking, were sold in support of Elizabeth, and everything that made the event possible, including the supper, venue and the Smoke and Mirrors band, was donated.
"As soon as people heard about Elizabeth's story, there was nobody that said no," Schiestel said.
The overwhelming turnout underscored how deeply Elizabeth's battle has touched the community.
"Estevan is just so good at supporting kids. People don't want to see a sick child suffer," Schiestel said.
Over 400 people came to the fundraiser to support the family.
A mysterious illness with a devastating impact
Elizabeth's journey with SMAS began in 2022 with seemingly minor stomach pains. Over time, however, her condition deteriorated.
"At first, it was just stomach aches, all the time," Schiestel recalled. "Then she started vomiting. She had migraines constantly. We kept going to emergency rooms – in Estevan, in Regina, in Saskatoon – but nobody could help us."
The pain became so severe that Elizabeth fainted multiple times.
"Her body would just shut down. She could see everything, but she couldn't move – like she was paralyzed," Schiestel recalled.
After months of uncertainty, a pediatrician in Regina ordered an upper gastrointestinal (GI) series with contrast, a specialized imaging test that tracks how food moves through the digestive tract.
"The gastroenterologist brought me in afterward and let me watch the video X-ray," Schiestel said. "She told me, 'If this had taken another five minutes, Elizabeth would be in emergency surgery right now.' It was that blocked."
But with SMAS being a very rare disease, it took many doctors and a long time to get the right diagnosis.
Superior Mesenteric Artery Syndrome (SMAS) is a rare, but very serious condition.
The struggle for treatment
Once diagnosed, Elizabeth was placed on a feeding tube, as she was unable to eat without experiencing unbearable pain. However, even that proved challenging.
"They tried for 45 minutes to insert the feeding tube past the compression, and they just couldn't do it," Schiestel said.
Doctors attempted a nutrition therapy plan, placing Elizabeth on protein shakes in the hopes of improving her condition. But within a month, she was back in the hospital, still vomiting and is now down to just 94 pounds.
"Her body was eating itself away," Schiestel said.
A more invasive feeding system was needed. Elizabeth underwent surgery to have a GJ (gastro-jejunal) feeding tube inserted directly into her stomach, allowing her to receive a slow, continuous drip of nutrients. "For four months, she was on a 24-hour feed through a drip line. That was the only way she could eat," Schiestel explained.
Even this was not without complications.
"Her body was rejecting the Mic-Key button," Schiestel said, referring to the small medical device that secures the feeding tube in place. "We had to go up numerous times to get it replaced."
The family also endured terrifying moments, such as when a family dog accidentally ripped out Elizabeth's feed line while she was visiting her grandparents' farm.
"We had to rush her to Estevan because Saskatchewan had a shortage of the Mic-Key buttons, so we didn't have extra … We had 15 minutes to get something into her stomach before the hole started closing up," Schiestel said. "We were 25 minutes away from Estevan … Thank God, I saw a police officer on the side of the road, and I slammed on my brakes, and he escorted us all the way to the hospital. He shut Fourth Street down for us. When we got there, we put a catheter in her stomach overnight until we could get her to Saskatoon the next day. We had to make sure she was stable enough.
"[Later] I did go to the cop shop and let them know that they did save her," she added.
Running out of options
In January 2024, Elizabeth underwent the Strong procedure, a minimally-invasive surgery meant to relieve the compression in her small intestine. Initially, it seemed successful.
"It worked – until May," Schiestel said.
By that time, Elizabeth was diagnosed with gastroparesis, a condition in which the stomach muscles stop working properly, leading to food remaining in the stomach for too long.
"Every time she ate, her pain levels went through the roof," Schiestel said.
The family soon realized that Saskatchewan's medical system could no longer offer a viable treatment path.
"We ran out of doctors' knowledge about the disease in Saskatchewan," Schiestel said. "There's only one surgeon in Montreal who really understands SMAS because he was trained by Dr. [Domingo T.] Alvear [a pediatric surgeon out of the U.S.A. performing surgical treatment for Superior Mesenteric Artery Compression Syndrome (SMACS)], the top surgeon in the world for this condition."
The Montreal doctor is currently reviewing Elizabeth's test results, with updates expected by March.
A daily battle
Today, Elizabeth remains in constant pain.
"Her pain levels are anywhere between a six and an eight, every single day," Schiestel said. "She's always exhausted because she can't sleep. She knows she has to eat, but she only manages once or twice a day."
Despite everything, Elizabeth continues to fight.
"Her jiu-jitsu coaches told her this is the biggest fight of her life," Schiestel said. "That keeps her motivated."
But there are moments of despair.
"She's strong. She knows she needs to fight, and she knows that the only way to do it is to stay positive. But there's been a couple hard moments where she just wanted to give up, and she told me that she just wanted God to take her because she couldn't handle the pain anymore. Some really hard conversations that we had to have with her that she had to keep holding on to hope.
"But I can't imagine being in her shoes. I mean, she had to give up jiu-jitsu, give up riding horses. She now had to give up her social life at school.
"No 13-year-old kid should have to do that."
Advocating for awareness
Beyond seeking treatment, the family is dedicated to raising awareness about SMAS. The condition affects only 0.013 to 0.3 per cent of people and is more common in females, but many cases go undiagnosed or are mistaken for eating disorders. For those reasons, it often takes too long to recognize the disease, in which timely treatment is crucial for saving patients.
"There are probably more people with SMAS out there, but they're getting diagnosed with eating disorders," Schiestel said. "By the time some of these kids are diagnosed, it's almost too late. I read about a boy in the U.S. who was diagnosed, and two hours later, he passed away from malnourishment."
Schiestel has been working with other families around the world through an international support group, and also plans to establish a Canadian community to share the knowledge and experience she acquires through their journey.
"Since we started speaking out, I've been contacted by three other moms looking for help," she said. "That's where I want to be – helping other families find the right direction."
The family is also fighting for greater recognition of SMAS within Canada's medical system.
"There's just not enough awareness," Schiestel said. "Even doctors don't always know what they're looking for."
She hopes to see more specialists trained in treating the condition and is working to bring Dr. Alvear to Canada to train surgeons, however, there are challenges with that as well.
"Right now, there's too much red tape," she said. "But we're pushing forward."
In the meantime, the Trepanier family remains focused on getting Elizabeth the surgery she needs in Montreal.
"The [duodenal] de-rotation surgery has a 98 per cent success rate," Schiestel said. "And that's what we want for her."
With the unwavering support of their community behind them, the family refuses to give up hope.
"I could never imagine living anywhere else," Schiestel said. "The support we've received is beyond words."
Donations to support the family with their medical expenses can be made via a GoFundMe campaign: . The family is also documenting Elizabeth’s journey on her Facebook page: .
For more information about the condition and treatment, check out the . (Content warning: the video depicts a surgery procedure performed and might be disturbing for some audience members.)
Trepanier-Schiestel family has also been raising awareness about Superior Mesenteric Artery Syndrome (SMAS) - a very rare, but very dangerous condition.
