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Thirty years ago, I was told that I had an incurable terminal illness called Fanconi anemia (FA). Doctors told my father I wouldn't live into my 20s. I'm now 44.
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If anything positive comes from any of this, I hope it is that by recognizing our complete helplessness towards mortality, we begin to look upon everything that surrounds us as a reflection of our own
FA has been my greatest teacher. Through the fires of fear and loss, and the lens of a condensed time perspective, this illness has made me inescapably aware of the preciousness of life.
We were so close to “normal,” but that got taken away with one phone call from our doctors.
One group of people we often think about but don’t often directly address is caregivers. All of the partners, parents, siblings, grandparents, and friends, we want you to know how vital you are.
The Fanconi Anemia Research Fund (FARF) is closely monitoring the updates regarding COVID-19, a respiratory illness caused by a new coronavirus, as well as potential implications on the FA community.