I knew that it was going to be done but I needed just that extra little shove to get me over the brow of the hill. For a while I could only scheme and ponder; nervously trying just my toe in the water; not quite ready to dive, in case it was too cold. Then, one evening, just before supper, I was called to the phone. I spoke into the receiver and a young girl’s voice responded.. In a well-controlled voice which, by its very calmness, betrayed the underlying emotion, she told me that her father had just died of hemochromatosis and her family had requested that donations in lieu of flowers be sent to the Canadian Hemochromatosis Society. She was just checking for the correct mailing address.
Somehow I managed to speak with equal matter-of-factness as I gave her the information she wanted, and succeeded reasonably well until she said something about his only recently having been diagnosed, “just five years too late!”
I groaned as we talked further and cried myself to sleep that night. The family lived in North Vancouver. How was it possible? We had been active on the Lower Mainland of British Columbia for several years and yet we had never reached this man. I felt that I knew them personally. I shared the sadness in that home and suffered the most terrible sense of hopelessness. As I had done so many times before, I reproached myself for not having done my job properly. I had been given the shove I needed.
A whole week!
It turned out to be not only one day of awareness but a whole week. Mayor Gil Blair of Richmond, British Columbia, was the first to sign a proclamation and it was at the suggestion of his office that the week of May 25 to 31 was designated. Had Mayor Blair and the corporation of Richmond not been amenable, we should probably have abandoned the whole undertaking. The fact that they did so, is due to an incredible set of circumstances.
When I told Tom Mark of CJOR radio in Vancouver about my plans for an awareness day, he proved to be a sympathetic listener and was quite obviously intrigued by the fact that anyone could actually be adversely affected by too much iron. He taped an interview with me, in which I explained what hemochromatosis was, told of the tragic consequences of iron overload and emphasized the need for awareness in order to achieve diagnosis before it was too late. The interview was broadcast very early on the following Sunday morning, to be followed by the expected number of phone calls. Then, having complied with the initial requests for information, we were mystified when, some days later, there was a further spate of inquiries. We could not account for the sudden renewal of interest, as we did not know that the interview had been broadcast a second time.
Article comments
1 - Marie Warder
Re: "There were more than 75,000 Canadians who could die if they were not found..."
After 25 years we now know that there are HUNDREDS OF THOUSANDS! Because this is an inherited disorder, our motto is "Find us one person and we have hope of saving a family!"
2 - Leslie Burke
You've always maintained that you don't believe in luck, so this will prove how faith invites Divine Intervention.
3 - Melinda Terblance
Did you ever - in your wildest dreams - think that a day would come when so many "iron" experts would meet in Canada during Awareness week? I still have a newsletter dated 1993, in which you wrote about meeting with representatives of the WHO, and later with many of the people who are here in Canada now, during a conference in Israel.