Jeff Green | May 21, 2009
Back to HomeFeature Article - May 21, 2009 Helping Isaac: Rivendell to Host Fundraiser for Rare DiseaseBy Jeff Green
“We just do whatever we can do for our children, just as all parents do.”
That's how Andrew McFadyen describes the efforts of his wife Ellen and himself over the past four years ever since their son Isaac was diagnosed with a rare genetic disorder that causes an enzyme deficiency, with devastating consequences to his quality of life.
Within a short time of Isaac being diagnosed with the condition, which has the medical name MPS VI, the McFadyens learned of a drug that had been approved in the United States. Naglazyme has been able to slow some of the effects of MPS VI and allow for improved life conditions for sufferers of the rare condition, which afflicts only three people in all of Canada.
Nagalzyme was not covered under the Ontario health plan, and at a cost of $300,000 to $1 million per year, it was well out of reach for the family. Thus began Andrew and Ellen's first campaign and Andrew's first media exposure. After major newspaper coverage in Toronto, and repeated interventions from Ontario Conservative Party health critic, and former Health Minister, Elizabeth Witmer, the province agreed to pay for the treatment. The treatment has had a major impact on Isaac's quality of life, and reversed some of the impacts of his condition.
“The treatment provides him with the enzyme he is lacking, but there are still many side effects. We call the treatment our lifeboat; it slows the ravages of the disease but it doesn't in any sense stop it,” said Isaac's father Andrew of the scenario faced by his now five-year-old son. “On the bright side, he is feeling better now than he has at any time in his life.”
For Andrew, a lifelong Liberal party activist (who is seeking the Liberal nomination in his home riding of Northumberland-Quinte West, a swing riding, for the next election) Elizabeth Witmer's efforts are a tribute to the role of a politician.
“She saw this as something she should be working on, and didn't stop. We sent her copies of Isaac's first report card and his class picture and she said she puts them up in her office to remind her why she is involved in politics,” said Andrew.
Finding a cure for MPS VI has become the major goal of the family, and when they learned that it takes $100,000 per year to fund a research project, the Isaac Foundation was established with the goal of raising $100,000 per year.
“We are racing against the clock, we realise that,” said Andrew McFadyen, “but there have been some exciting results from some of the research projects that are going on around the world.”
Ellen and Andrew, along with Isaac and younger brother Gabriel, live in Campbellford, but Andrew commutes to Kingston every day to teach at Winston Churchill Public School, and maintains a lot of connections in the city where he attended university.
Raising $100,000 per year while living on a teacher's salary and raising a child with MPS VI is certainly a challenge for the McFadyens, but they have received help from some unlikely places, including support from celebrities ranging from Stuart Maclean of the Vinyl Cafe, to Toronto Blue Jays Star Pitcher Roy Halliday (who recently donated $2,000 to the foundation, $1,000 from a prize he won and $1,000 of his own money) and musicians Danny Michel and John Mayor.
Since its inception thjree years ago, the foundation comes home to the Kingston area every year for its major fundraising event, a celebrity golf tournament and silent auction. The tournament has taken place at the Inverary Golf Club for three years, and this year it is coming to Verona's Rivendell Golf Club, where Andrew played golf all through his university days.
“The tournament is a kick off to the next fiscal year. We make announcements, have a big celebration, and if it can be hosted by people we care about and care about us, so much the better,” he said.
It is not only the connection that Andrew McFadyen has maintained at Rivendell that pulled the tournament there, the layout of the course and the extensive clubhouse facilities were another factor.
“The tournament is Isaac's favourite day, and some of the foundation’s supporters, like the Tragically Hip, donate auction items,” said Andrew.
There are still spots left for people who want to play in the tournament. The cost is $500 for a foursome until the end of May, and includes lunch, dinner, and a golf cart. For further information about how to get involved or donate to the Isaac foundation, go to www.theisaacfoundation.com.
Ninety-eight percent of all the money raised by the foundation goes to medical research.