Mady, our Gutsy Walk 2016 National Honourary Chair
Mady has been through a lot for an eight year old.
In many ways, she is just another happy, bright kid. Her favorite subject is recess, and she loves playing with her sister and friends. But Mady has had to deal with more than any young child should ever have to.
"It all started when she was only two and a half – when we were suddenly seeing bloody diarrhea," says her mother Kathy. "Up to 30 diapers a day." Within a few weeks she had been diagnosed with ulcerative colitis. But that was only the beginning of her journey.
They got her started on medication to calm the inflammation, but their first try was unsuccessful. In fact, the first medications she was given actually made her condition worse. "It turned out that she had an intolerance to the anti-inflammatory she had been prescribed," says Kathy. "Until they figured that out, it made everything worse." Courses of steroids and immune suppressants eventually brought some stability – but not for long.
Less than a year later Mady was hospitalized with another bad flare-up. This time doctors ordered 'total perenteral nutrition,' or TPN, which meant that Mady was being fed all nutrients intravenously. Her hospital stay became longer when doctors found Mady had developed a C. difficile infection, which kept her in hospital for a full month. "When other kids her age were out playing, she was stuck in a hospital bed," says her mom. "The hospital became our second home – but we try to remember fun activities like bingo night and the art room rather than pokes and procedures and pain."
When she finally got to go home, her health didn't last long. The infection returned within two weeks, and it was back to the hospital for Mady and her family. At that point, doctors decided that the best course of action for Mady, still only three years old, was surgery. In November of that year Mady had a subtotal colectomy, removing her entire large bowel. (you can learn more about surgery for Crohn's and colitis here)
Within weeks, Mady developed flu-like symptoms. The surgery was supposed to alleviate the constant pain and diarrhea she had been facing – but now doctors found a bowel obstruction was causing complications. This meant MORE surgery, and a subsequent obstruction only weeks later meant yet another surgery for Mady. "She was so brave," says Kathy. "She is definitely the bravest person I know."
The following spring, an MRE found inflammation in her small bowel, which meant a change in her diagnosis: Crohn's disease. Mady had a nasogastric tube inserted to provide enteral nutrition. In fact, Mady wasn't able to eat food for a full 18 months. This quelled the recurring obstructions, but not the chronic inflammation. Eventually, experimenting with numerous medications and doses helped Mady achieve remission.
Now eight years old, Mady is in grade three - and has gone over two years without being hospitalized. While her journey has had ups and downs, Mady and her family have never missed the Gutsy Walk. This year, their sixth, Mady and her mom are stepping up in a big way. They are the 2016 Gutsy Walk National Honorary Chairs.
"Our family calls it the Mady Walk", says Kathy. "For us, it's one of the biggest family gatherings of the year – the kids ride scooters, have their faces painted – it is a show of love and support for Mady."
In the past few years 'Mady's Team' has been 40-50 people strong – parents, grandparents, cousins, even some young friends of Mady's. Inspired by Mady's perseverance, her young friends have joined her to raise over $10,000 over the years. Overall, 'Mady's Team' has raised over $50,000!
This year, thousands of Canadians will walk together – for friends, for family, and for people like Mady – to make Crohn's and colitis stop. For life.
Register today to be a part of Gutsy Walk 2016 – Sunday, June 5.
If you have already registered, share this story with your friends, family and colleagues to show them how important the Gutsy Walk is. Ask for a pledge, or ask them to participate with you! If you are not able to join the Gutsy Walk this year, you can pledge Mady's team.
It's time to make it stop for Mady. It's time to make it stop. For life.