Estate Planning

Fanconi Anemia

By Hull and Hull LLP

My colleagues and I recently attended the 10^th Annual Fundraiser for Fanconi Canada, an inspiring event that raises money for Fanconi Anemia (FA), an inherited condition that leaves bone marrow unable to make new blood cells. 70 per cent of FA patients need a stem cell or bone marrow transplant. It occurs equally in males and females and is found in all ethnic groups. A truly non-discriminatory disorder.

FA is usually diagnosed in childhood, with the median age of diagnosis being 7 years old. Many affected do not live into adulthood. However, research is steadily improving the life expectancy of FA patients.

At the event I attended, the keynote speaker was a bright, articulate young woman in her early 20's who had just graduated from University. She spoke eloquently and poignantly about what it means to have FA and how it pervades everything about one's life. Like most young grads, she is applying for jobs, something she never expected she would be able to do. She is now coming to the realization that she must plan for her life and is moving forward with appreciation and optimism for the ordinary things many of us take for granted.

Estates practitioners know that it is important to plan for death; it is an inevitability that we will all face. But what the young woman with FA made so abundantly clear is that we must not forget to plan for life along the way as well.

If you would like to consider a donation or even plan for a charitable gift for Fanconi Anemia research in your own Will, see the Fanconi Canada Website.

Sharon Davis

Full post as published by Toronto Estate Law Blog on May 18, 2010 (boomark / email).