I have entitled this “My Forty Years' Journey in 10 Minutes”, so I hope you will bear with me. I have tried to limit it.
I am the mother of five children, the wife of Reverend Keith Eddy, and the founder and first CEO of Candlelighters Childhood Cancer Foundation Canada. “It's better to light one candle than curse the darkness” was our motto.
My son Bryan was diagnosed with childhood cancer in 1972. For us, the trip to the hospital was 55 miles coming and going. The disruption of family life caused considerable distress, and you have heard that from the two previous speakers.
Information for families living with childhood cancer was not available at that time. That's why a group of us decided to form a support group at our hospital. We brought in medical specialists, social workers, etc., to give us an idea of how to handle our problem.
It was during this time that I was contacted by Candlelighters Childhood Cancer Foundation in the U.S. I was asked to come to Washington, DC, and sit on its board of directors. They were working on the same issues as we were. They asked me to be their Canadian representative on the board.
Our son went into remission and encouraged me to continue with the work. We joined a group called Canadians for Health Research. He was there at the beginning of the issue Parliament was discussing in May of 1976, capital punishment. Canadians for Health Research asked him to join them to help resolve the issue of medical research reduction.
You have a photograph of him. He made his own picket sign, and with 400 others he marched on Parliament. The picket sign read, “I have leukemia. Without research, I am on death row”. He died three months later.
In 1984....
You can see that it's still here.
In 1984 Stephen Fonyo finished the Terry Fox run. It was called “journey for lives”. When he finished that run, the government gave the Canadian Cancer Society $1 million for childhood cancer projects. It invested $500,000 of that into research, but it didn't know what to do with the other half, so it just invested it.
Someone found me and asked if I would like to do something in the childhood cancer area. They gave me the interest from the money to start the childhood cancer foundation. When I retired in the early 1990s, we had found about 51 support groups starting across Canada. I tried to help them start. In 1987 we were able to incorporate the foundation.
We've done a lot of work helping families. You have before you, I hope, the foundation's work up until now. I would like to tell some people about that and about what we wanted to accomplish.
We have programs for families, for teachers, and for professionals. We have teenagers who network with other teenagers who have similar problems.
One of the last things I was able to do was to start a survivor's scholarship. I'm happy to say that we had 123 scholarship applications this year, so patients are surviving, and we are very pleased with that, of course.
We have an 82% survival rate; I hate to say this, but 70% of those children are having problems because of their protocols. Whether they be cognitive or other physical problems, they do develop, and these ladies are proof of that. This doesn't just happen for a few weeks. We've needed to have support beyond that. One of the things we could not do—and we've never taken a dime of government money until now—was to provide the necessary arrangement for compassionate leave. This, of course, is your job. We are more than grateful that you have taken this on.
I hope I'm not running over time.
I'd like to emphasis that over the years I have received letters about this exact problem that would practically fill this room. The first tsunami is the diagnosis. The second is wondering how we are going to make it financially. I have watched many families go on welfare or lose a partner because the partner couldn't cope anymore with the problem. You need to consider this.
We have a benevolent fund for those who can't afford to bury a child. We don't give them the entire amount, of course, but we have been working hard on every aspect of childhood cancer to help families, and this bill is so important.
Mrs. Sharon Ruth has worked with her MP, Gordon Brown. Gordon O'Connor was my helper to get things started here. On August 7 in Vancouver the Prime Minister announced—and I was there, happily—that the changes to the compassionate leave section of EI were taking place.
It's really necessary. I would say that up to 52 weeks, particularly, gives families an opportunity to ask how they are going to adjust to this situation. They haven't had that opportunity before; they just lost half their income.
As I've said before, some of those families have gone down to absolutely nothing. They need this assistance, psychologically as well as financially, to help them through. I know aboriginals in the north—I was writing to them—had a terrible time trying to get down to Winnipeg to bring their child. They couldn't do it. Their partners would leave, and their sons and other people would take up alcohol to hide their problems. This is nationwide.
We are pleased that you are finally considering this bill and we look forward to hearing that you have listened and will take these adjustments into consideration.
Thank you. I hope I haven't gone over time.