a call and an email

October 17, 2009 at 8:53 am 1 comment

I received an email yesterday from a mom with a 2 month old with ARPKD. And tonight I received a phone call from a pregnant woman whose baby has a possible “PKD” diagnosis.  Two in one week.  The mom with the 2 month sounded so much like Gabe’s story it brought back so many memories.

It makes me feel so good to receive these calls and emails and to be helpful for these people. It can be so lonely to have this diagnosis. But it also makes me so sad. So sad that there is not a cure yet and people are still in this position that they need help and information.  I am so thankful the foundation is here for us and that when I was in that position I could reach out to others and that now people can reach out to me. But what about all of those women who are pregnant and don’t know about the foundation and are never able to find us for support? I feel so sorry for them. Like I said it can such a lonely diagnosis, especially when your doctor doesn’t know a lot about it and isn’t giving you the right information.

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Entry filed under: Uncategorized.

Over the edge So close

1 Comment Add your own

  • 1. Julia  |  October 18, 2009 at 10:38 pm

    I am glad you are there for them.

    Reply

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