Nine Year Old Cf Patient Inspires Children To Help Other Children

And reaches for a BIG GIVE goal of raising $5,000.00

Toronto — When you meet nine-year-old Madison Faith MacGregor you see freckles, energy and wisdom beyond her young age. A purple belt in karate, a competitive dancer and a budding young artist, Madison is curious about the world around her, cultural differences and helping people. What you don’t see is that she was also born with cystic fibrosis (CF), the most common fatal genetic condition affecting young Canadians.

After being operated on at one day old for a distended abdomen at birth, Madison spent the first couple of months of her life at the Hospital for Sick Children. Looking at her now, that all seems like a very distant life, one small reminder however, is the regular visits she has to make to the CF Clinic at Sick Kids in Toronto every three months for appointments that check her lungs and organs and are designed to catch and treat any threatening bacteria early on.

When asked how it feels to have this condition Madison sighs as she reflects on her heavy protocol, "CF can sometimes feel like it is never ending because you need to take pills before you eat every meal and snack and have physiotherapy every morning before school and every night before bed. When I get bacteria in my lungs I have to inhale antibiotics through a special machine before both rounds of physio - and that can last a year or longer. I really don’t enjoy that part at all." She adds, "But I know that other CF kids have even more medication than me and that they have to stay in the hospital away from their families, hooked up to tubes and wires. I am very lucky that I am healthy."

Madison is an active part of the HOPE that prevails that a cure for CF will be found soon. Especially, it seems, if she has anything to do with it. Combining her artistic talent with her desire to raise more money than last years’ lemonade sale, she decided to do an Art Gallery. Her cousins and friends quickly joined in to help her and their combined efforts have produced 100 portraits of faces. Madison has aptly called the gallery Faces of Hope, Children Helping Children. She hopes to raise $5,000 through the sale of artwork, gift cards created with the original artwork, and admission to the gallery ($10.00 or $20.00 per family).

The portraits, by kids’ aged five to fifteen years, show various emotions-smiles, tears and joy-in a mix of ethnic faces. Beyond that, you see a profound demonstration of children GIVING BIG in a way that means something to all of them. "I think this is such a great lesson in empowerment," says Madison’s mom Kim who fully supports the idea and the passion behind it. "It shows the power people have to help each other - regardless of age." When her mother asked Madison why she wanted to do this she responded, "It’s not for me mom –it’s for all the kids I see at the hospital who deserve to play and run and go to school and have fun like me – like all kids should!"

Facts about CF

• One in every 3,600 children in Canada is born with CF.
• Cystic fibrosis is a fatal inherited disease, which affects primarily the lungs and digestive system.
• Individuals with cystic fibrosis must take, on average, 20 enzyme pills a day to digest their food.
• In 1960, most children with CF did not live long enough to attend kindergarten; today half of all Canadians with CF are expected to live into their late 30s and beyond.

The Canadian Cystic Fibrosis Foundation (CCFF)

The CCFF is a Canada-wide charitable health organization, with more than 50 volunteer chapters that fund CF research and care. In 2008, the Foundation will support more than 50 research projects that are exploring all aspects of the CF puzzle; from investigating new methods of fighting infection and inflammation in the lungs, to finding new therapies that target the basic defect at a cellular level. As yet, there is no known cure for CF. However, the discovery of the gene responsible for cystic fibrosis by a Canadian-led team of researchers, supported by the CCFF, was a first and crucial step toward finding a cure or an effective control for this devastating disease. For more information, please visit www.cysticfibrosis.ca.