Archive for October, 2013


Always in the back of my head I think of all of the terrible things that can happen in life especially with my boys with ARPKD. But I try very hard not to think of them very often. Sadly a nine year old with ARPKD passed away about a month ago. He was the first child with ARPKD I met who had already had a transplant. I met him and his mom at my first PKDF convention in DC when Gabe was three months old. His name was Eric and he had a rough start. He barely made it at birth and then had his kidneys removed. He was on dialysis until he received a kidney from his aunt shortly before he turned two. He was then fairly “healthy” as far as his kidney went but had some emotional and behavioral issues. His mom Beth is an amazing mom and was on top of everything! She knew a lot about ARPKD and was always so willing to talk to other families about what she had been through. I saw Beth again in April here in NY when we had our PKD in Children Conference. We talked a lot and spent some time together. She had a lot to offer during the conference. Shortly after that Eric became ill and the first thought was that he needed a liver because his CHF had progressed. That then turned into a diagnosis of PTLD, which is a rare type of lymphoma that some people get after having a transplant because of being so immunosuppressed. Eric’s little body could not handle the chemo and he was no longer a candidate for a new liver. He was taken home to be cared for by hospice in September and passed away shortly after.

I cannot even imagine the pain of losing a child. As I have said before I am not religious enough to believe in an afterlife and often wish I were to help me deal with death. But I think even then it would be very hard to believe in G-d and an afterlife after losing a child. I stopped watching tv and reading the news a while ago because it was very depressing to me. Anytime a child dies is so sad. But this touched a nerve. I had met Eric, had talked to Beth over the years, and obviously the big one… He had ARPKD like Max and Gabe. It makes it all that much more real when something this sad happens.

I think of Eric and Beth often and hope she is healing as best as she can.


October 23, 2013 at 9:08 am Leave a comment

October 2013
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