Another baby

Another baby died today from ARPKD. He was over a month old. He was very severe at birth and they had already removed both of his kidneys. I don’t know all of the details but know they couldn’t get him off of the ventilator and his blood pressure dropped too low. That is really all I know. But I am so saddened by this. Every time a baby dies from ARPKD it is so frustrating to me. And I know I am just hearing about more lately because of my involvement with the foundation but it seems like so many more lately. This was a baby who I had been in contact with the grandma. It is always sad but always so much harder when I had been in personal contact with the person. Just another name to add to my “Remembrance” list that is getting too long.  I want to remember these babies but wish I didn’t have to keep adding names to the list. I hope one day that no babies will die from this disease. But I have a feeling that is wishful thinking and way too hopeful and probably will never be. Which is just so darn depressing.