Winnipeg boy raises money to give young Crohn's sufferers a less painful option
'Living with [Crohn's] sucks, but being able to help others with it would be awesome,' Cohen Martyniuk says
Every six months, Cohen Martyniuk braces himself for a three-day ritual of pain that comes before he gets a colonoscopy to check on his Crohn's disease.
"I have to stay home, because what they do is give you a laxative and you basically go to the washroom and you sit there all day, and it's painful," the 14-year-old says.
The Westwood Collegiate student, who was first diagnosed four years ago, is one of more 8,705 Manitobans living with Crohn's disease or ulcerative colitis.
He recently learned there is a new, less invasive way to get checked, but the intestinal ultrasound machine needed to do it could cost up to $80,000 and no one had agreed to fund it — until friends, families and an entire school stepped up to help pay for it.
Inflammatory bowel disease — Crohn's and ulcerative colitis are the main types — inflames the lining of the gastrointestinal tract, making it hard to digest food, absorb nutrients, and eliminate waste like everyone else.
Martyniuk is part of a growing trend of the disease in Canada — he is young.
"We certainly see more and more every day, if you look at the trends. Twenty years ago we didn't see these high numbers, but in the last 10 years, it's becoming more frequent," said Cohen's doctor, Wael El-Matary, a pediatric gastroenterologist at Winnipeg's Health Sciences Centre Children's Hospital and a researcher at the University of Manitoba.
The number of children diagnosed with inflammatory bowel disease has jumped in the last 10 years by 50 per cent, Crohn's and Colitis Canada says.
"I diagnose about 25 to 30 new kids a year," El-Matary said.
Those kids go through the same painful bowel cleansing as Cohen. The colonoscopy checkups they get every six months also mean trips to the hospital, where they're put under anesthetic.
There is also another cost: kids are off school, so parents are off work to take care of them leading up to and after hospital visits.
Our doctor was trained to use it, but we weren't able to have it here- Nadine Martyniuk
Crohn's and Colitis Canada estimates the direct medical costs for caring for Canadians with inflammatory bowel disease is $1.28 billion a year, but indirect costs such as lost wages and productivity add up to another $629 million a year.
So when El-Matary told Cohen and his family about the less invasive intestinal ultrasound machine that wouldn't require surgery, Cohen's parents thought their son was finally catching a break.
"We didn't know that was even an option or it existed until our doctor went away, learned about, got trained on it, came back with information for it and we thought, 'When are we getting this?' " said Cohen's dad, Brad Martyniuk.
However, the cost of the machine is as much as $80,000 and there was no funding for it at the Children's Hospital.
"It just seemed frustrating that a machine that really wasn't that much money was so close within our reach. Our doctor was trained to use it, but we weren't able to have it here," said Nadine Martyniuk, Cohen's mom.
They started raising money for the machine in June. Friends and family came up with $30,000.
Teens help raise funds
"Living with [Crohn's] sucks, but being able to help others with it would be awesome," Cohen said.
Then the Maroon and White Society at St. Paul's High School, a student-led philanthropic group, decided to pitch in.
"His story was so moving and it was a unanimous decision to support Cohen's cause," Maroon and White Society president Chris George said.
The group launched a series of fundraisers, including hot dog lunches, floor hockey games and a casual dress for Cohen day (St. Paul's students wear uniforms). They were a big hit at the private high school, and alumni who heard about the cause also sent in private donations.
By Friday, the students had hit their goal of raising $30,000, and the total continues to climb.
All the fundraisers have added up to enough to cover the cost of the machine.
"I've just been so overwhelmed with this whole process. As a mom, and seeing all these people come together, it's amazing," said Nadine Martyniuk, who cried after seeing all the kids rally around her son.
"It's been a long journey and this really gives purpose to this journey, and it's pretty special to see all these kids wanting to help like this."
"I think it's going to help a lot of kids," Cohen said.
It may even help adults suffering from inflammatory bowel disease.
Cohen wants any extra money raised to go toward purchasing another intestinal ultrasound machine.
"This is something we can do to give back to those other families who are going through this," his mom said.
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