Sloane Feldberg, 12, chairs annual Crohn’s and colitis walk

Raquel, left, and Sloane Feldberg at last year’s Gutsy Walk

TORONTO — Twelve-year-old Sloane Feldberg is the honorary chair of this year’s Toronto Gutsy Walk, which raises money for a cause that’s been part of her life since day one. 

Sloane was diagnosed with ulcerative colitis at age eight, but she was already quite familiar with the condition.  

“There was blood in my stool, and I had a very sore stomach all the time. Ulcerative colitis was already in my family, as my mom [Raquel] was diagnosed the year I was born. I’ve had CT scans, MRIs, and have been put to sleep to have colonoscopies at the hospital,” she said.

“Every day, I take medication to help control my disease. Without taking my medication, I would be sick – I really need it,” she added.

“The Gutsy Walk brought a lot of meaning to me and my family, and allowed my mom and me to really bond and focus on our disease in a positive way by fundraising and bringing awareness to our friends, family and my classmates.”

On June 7, Canadians in more than 60 communities across the country will join together for Crohn’s and Colitis Canada’s 20th annual Gutsy Walk. The five-kilometre Toronto event will start at 10:30 a.m. at Sunnybrook Park.

The mother-daughter duo is part of a team called This Bag Ain’t Prada. 

“Our logo is three people holding hands. Two have Prada bags and one has an ostomy bag to be a symbol of support,” explained Sloane, who designed the logo.

“My mom was wearing an ostomy bag and it was definitely not like a Prada bag, but her ileostomy actually saved her life,” she said.

Diagnosed in 2002, Raquel Feldberg, 47, has spent more than 2-1/2 years of her life in and out of the hospital.

“I have had complications and multiple surgeries, which landed me in Mount Sinai Hospital for a total of approximately nine months between September, 2011 and May 2013. My colon was friable, full of infection and necrotic [dead] – it needed to come out immediately,” said Raquel.

Raquel’s diagnosis began a painful 11-year journey that she describes as a time of confusion, fear and frustration.

“I had four more major surgeries plus other painful procedures: full-time IV medication therapy, internal abscess and leak, internal/external drainage catheter through my backside for four months, major hair loss, severe muscle atrophy, painful skin infections and horrifying relentless pvoderma gangrenosom splitting open my skin across my abdomen,” she said.

After her final surgery in 2013 and while recovering in hospital, Raquel started a fundraising campaign and assembled a team from her hospital bed. Some 5-1/2 weeks later, she walked her first Gutsy Walk and was named one of Crohn’s and Colitis Canada’s top fundraisers in Toronto, and one of the Top 10 in Canada.

Crohn’s and ulcerative colitis are diseases that inflame the lining of the gastrointestinal tract and disrupt the body’s ability to digest food, absorb nutrition and eliminate waste.

Inflammatory bowel disease (IBD) describes a group of conditions. The two main forms are Crohn’s and ulcerative colitis. People with IBD have one disease or the other, but not both. 

“Since its inception, Gutsy Walk has raised $29 million. The Gutsy Walk is often a first contact point for people with Crohn’s and colitis. It becomes quite a hopeful community event because people meet others who are living and succeeding with the disease,” said C.K. DesGrosseilliers, marketing and communications manager for Crohn’s and Colitis Canada. 

One in every 150 Canadians is living with Crohn’s or colitis, a rate that’s among the highest worldwide. The number of new cases of Crohn’s disease in Canadian children has almost doubled since 1995.

 “To be able to share my story and the journey our family is taking with this disease is so important. We will continue to fight for the cure,” Raquel said.

For more information, visit www.gutsywalk.ca.