Posts Tagged ‘death’

Well it has been several weeks since I have had the opportunity to post anything. Things have been, how shall I say this, hectic sounds appropriate. This week alone the basement in our house has flooded twice, once being at 2 am, the washing machine has become possessed and the dishwasher flooding my kitchen – unrelated to the basement floodings – and of course our day-shift nurse missing 4 of the last 7 scheduled shifts has left little time for blogging or anything else.

I am not certain that I have anything of substance to write about today except to tell you that I am alive. I should update everyone on the 12 year old boy I had written about in my last post passed away two weekends ago. This disease, is horrible. Then news came that a second patient passed away the following day. Too many precious lives taken and sadly it will continue to do so until a cure can be found. As fate would have it, five days later the Fanconi Anemia Scientific Symposium began for researchers from around the world. What a timely, yet tragic reminder for this gathering of scientist and doctors to discuss treatment, research, and the path to a cure. Anyone that is connected to this disease in any way will tell you how precious the angels of FA are towards finding a cure.

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Last evening & today have been rather somber. Saturday at around 1pm 6 year old Ashlynn passed away in her mother’s arms from complications of her bone marrow transplant which she need because she had Fanconi Anemia. My son was diagnosed with this terrible disease a year and a half ago. We have already witnessed close to a dozen parents lose their children in that time. Why? You certainly try not to focus on the life-threatening aspect in day to day life. You try to enjoy each day together as a blessing. For my son though his anomalies cause him more issues than most as he has a unique presentation of FA. Researchers have commented how curious they are to learn more about which gene he has. Overall though everytime another FA child earns their wings it is tough to not think about it for a few days. It reminds us that while there have been great strides in the research of this disease which has revealed some significant general cancer findings more still is needed. With the cancer link to FA and the pathways the exist Fanconi Anemia research literally impacts & benefits the greater world population. Please consider donating to research any amount helps. You can find more info about FA and donating on the Fanconi Anemia Research Fund website. Thanks you.

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