Her heart goes on: A story of organ donation

But they weren't classic for Fabry either; the disorder didn't typically involve the heart, yet I had these odd intense pains in my chest. Could it be that Fabry affected me, a female, differently?

Clarke took my family history: My mother, sister and cousin had died of kidney failure. My brother, who at the time was undergoing a kidney transplant in Chicago, later also died. Had they all been unsuspecting victims of Fabry disease?

Soon after my diagnosis, Iwanochko made it clear to me that without a transplant, my heart would soon give out. I was tired of the pain. I wanted to live my life again. I wasn't ready to die! I agreed to the transplant.

Having a heart transplant
Clarke attended the operation, taking tissue from my old heart for analysis. He was keen to determine if my case was the exception to the rule – or had Fabry disease been misunderstood and misdiagnosed all along? He hired a researcher to try to isolate the Fabry gene in my heart tissue.

The transplant was a mixed blessing. Technically it was a success, but for years afterward I suffered tissue rejection. "A transplant is a miracle; you would be dead without it," Brunt told me. "But this is not one of those fairy tales where you have a transplant and life is wonderful. You had a rocky road in terms of rejection."

Rocky or not, my life took on increasing importance. My survival meant science now had an opportunity to research Fabry, to prove that the disease affects females and to isolate the Fabry gene in the heart. This research was essential for the development of proper treatments. If I had died, there would be no incentive for the research to continue.

But then the research stopped. It was 1996, and the Government of Ontario was cutting budgets. Desperate, I called Senator Nancy Ruth, whom I had known since making a film about her for Man Alive. Dedicated to women's causes and issues, Ruth's foundation donated $20,000 a year for two years to research my case. Next I approached Dr. John Evans, a noted figure in medicine and education, then-chair of Torstar Corporation. He agreed to fund the research for two years.

Page 2 of 3 -- Find out if Azza can continue her research without funding on page 3.