January 6, 2011 at 10:21 pm 2 comments

Right now I am in contact with six new people. One lost a baby last week to ADPKD. One had a baby this week with ARPKD. He is stable but they are thinking they might have to remove his kidneys next week because he hasn’t started peeing yet. Another one just found out her two sons have ARPKD. Two other women are pregnant with babies with ARPKD. And another woman is married to a man with ADPKD and her dad died from ADPKD.

Sometimes when it rains it pours with this disease. I hope I am of some help to these people. Matt worries that I get so emotionally involved but I need to do this for so many reasons. I need to give these people some semblance of hope if I can.  And it makes me feel like I am doing something with this disease. I just really hope I’m not giving out false hope.


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Monday Memories The System

2 Comments Add your own

  • 1. Julia Roberts  |  January 6, 2011 at 11:53 pm

    You are not giving them false hope. You are giving them the support they need – something we ALL needed when we found out about this disease. You are an amazing mom, friend, advocate and supporter.

    Don’t stop doing it! We all need you.

  • 2. Naomi warburton  |  January 8, 2011 at 8:03 am

    You haven’t given me false hope, just a lot of support and in for that I needed. We are very lucky, when a doctor says upto eighty percent chance, that is really great plus with the birth of Stephen this week, whose lungs were not so developed and they gave a poor prognosis, everybody has a reason to hope so it’s not false hope at all. It’s really great people have someone to contact in times like this with this horrible disease. If the other pregnant woman needs any support, feel free to point her in my direction x


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