Again

July 1, 2010 at 8:04 pm Leave a comment

The baby I wrote about that was born on Friday passed away today. His lungs were just too underdeveloped and his kidneys were not functioning at all. I cannot even express how sad this makes me. And I cannot even imagine what this family is going through and feeling. And they have two older children who have never been tested for ARPKD. Just when I am doing okay with this disease I get hit again with a ton of bricks. I just keep thinking this could have been us. But we were the lucky ones and my boys are doing well with ARPKD. Why did this baby have to die?

And I also had a call today from a grandma whose three month old granddaughter has ARPKD. She seems to be doing well but her kidneys are growing really fast although functioning.

Like I’ve said before we need to find treatments a cure for this disease.

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Good news Lucky number 13

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