Another baby

September 1, 2009 at 9:27 am Leave a comment

Another baby passed away from ARPKD.  Even though I know the statistic is that 30% of babies do die at birth from this disease it still hurts so much when I hear of another baby passing away. Especially if I have been in contact with the family. It is just so devastating. And this baby was 7 weeks old, so not even at birth. And had been through so much. That is not to say the babies who die right at birth also have not been through so much.  I also recently received an email from a woman whose baby died after 5 or 6 months.  It is just so frustrating to me that in 2009 babies are still dying from this disease. It feels like we are no closer to a cure or treatment and it also feels like it is more than 30%. It just feels like so many lately. Recently someone asked me how the boys were and of course I went off on my tangent and then their eyes glazed over and they said “who knows maybe they will have a cure soon”. Ugh. That is so frustrating to me. People just don’t get it. I had someone else also recently say in surprise “so they will need a transplant?”. I think people just don’t get it.  Because the boys look so good right now they don’t think I really mean it when I say that the boys will need a transplant. And then to have all of these babies dying from the disease and so many people in denial about it.  So very sad….

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the future Funny world

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