Members acandme Posted August 27, 2008 Members Report Share Posted August 27, 2008 It has been so hard to watch what this illness is doing to her little body, but the idea of her being gone hurts so much. She is five years old and we have known since she was two that she would die, as she has a syndrome that is degenerative. Most children die AT five, some as young as three and some can make it to eight. / I'm not handling it well right now and I'm so grateful to have found this site. No one knows how to talk to me about this, not even my husband. To everyone around me it's unthinkable, losing a child, so they avoid it/me. When they do try to talk to me I end up comforting THEM. My daughter is getting weaker and i'm having a really hard time dealing with it all.So thanks for being here. i'm really glad you are. Link to comment Share on other sites More sharing options...
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