Another baby

June 23, 2010 at 8:46 pm Leave a comment

Someone emailed me today who lost a baby to ARPKD in May…. in New York City. It’s still happening in 2010 in major cities. How can we stop this? And how can I help this family cope with their loss? People wonder why I’m sad so often about this disease. I’m sad for my boys. But I’m also sad for the babies who don’t even get the chance that my boys are lucky enough to have in this world. And I’m sad for the parents of these ARPKD angels who have to make decisions that no parents should ever have to make about their dying babies and about future children they might or might not have because of this devastating disease. Yes, my boys are doing well at the moment but so many children and babies with ARPKD are not. We need to find treatments and a cure for this disease!

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Birthday boy “normal” kid stuff

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