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Monday, October 5, 2015

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Walk aims to help kids like Liam

Tags: Health

Whether you call it intuition or instinct, the “feeling” that mothers get when they know something is not right was what Natalie Doyle experienced throughout her second pregnancy.

“I experienced a gut feeling, a sixth sense or simply knew something without knowing how,” Doyle said.

Liam Doyle, now almost two years old, was born with cystic fibrosis (CF). Both Natalie and her husband, Jamey, are carriers but didn’t know it.

A child has CF when he or she inherits two defective copies of the gene responsible for the disease, one from each parent. One in 25 Canadians is a CF carrier. It’s the most common fatal genetic disease in the country, affecting approximately 3,300 Canadian children and young adults. There is no cure.

Every year, thousands of Canadians from coast-to-coast lace up and join the Great Strides Walk, a family-oriented, community-supported fundraising event.  This year, there will be more than 60 walk locations across Canada.

Doyle was approached to lead York Region’s inaugural walk on May 25.

“We expect a minimum of 100 people coming out for the York Region walk with a target fundraising goal of $15,000.  Across the country, we are looking to raise $3.3 million. Since the walk’s inception in 2005, we have raised over $18.5 million,” said Karen Baldwin, regional fundraising co-ordinator at Cystic Fibrosis Canada.

 “It has been my therapy. I have created a Facebook page for Liam called Great Strides Walk for Liam Bear. I’m working on securing members of the York Region community to join our family, Team Bears. Our mission is to make CF stand for Cure Found,” Doyle said.

CF is a multi-system disease that affects mainly the lungs and the digestive system. In the lungs, where the effects are most devastating, a build-up of thick mucus causes severe respiratory problems.  Mucus and protein also build up in the digestive tract, making it difficult to digest and absorb nutrients from food.

Symptoms can include difficulty breathing, life-altering respiratory tract problems, severe, chronic lung infections, impaired growth or weight gain and extreme difficulty absorbing nutrients.

Newborn screening for CF leads to earlier treatment and thus gives children a better start in life. The median survival age for Canadians with CF is 48.5 years.

Liam’s three-year-old sister, Madelynn, does not have CF, but could be a carrier.

“Statistics say there was a one in four chance for us to pass CF on to our children. A one in four chance the child will have CF. A one in four chance that they will not have any gene whatsoever and a 50 per cent chance they can be a carrier,” Doyle said.

Liam’s condition is explained to Madelynn through storytelling.

“Icky Sticky Booger Bugs by Sherry Frith is a book that teaches kids that you have to cough out the mucus to get it out.  Madelynn helps out at home by spoon-feeding Liam his applesauce, which contains his required enzymes. Enzymes enable his body to preserve the nutrients, fats and proteins. Otherwise his pancreas doesn’t function,” stated Doyle.

Physiotherapy is a regular part of Liam’s home care. “We tap his chest area where his lungs are for three minutes on each side, and we do this twice a day.  This helps loosen some of the thick mucus where bacteria lives and breathes,” Doyle said.

“Every three months we take Liam to SickKids Hospital to do a throat swab to make sure there are no bad bacteria.

“All in all, Liam is such a happy and energetic little boy – a sweet and gentle little man.  My hero.  I will not stop raising awareness and money until a cure or treatment is found,” Doyle said.

Great Strides Walk in York Region will start at the Turtle Jacks restaurant, 11740 Yonge St. in Richmond Hill, and participants will have two 4-km walking route options from which to choose. Live music, donated coffee, muffins and bottled water will be distributed and the event will conclude with a barbecue lunch at Turtle Jacks after the walk.

For more information, visit www.cysticfibrosis.ca.

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