Thanks so much for responding to my post! I can relate exactly to your feelings. My granddaughter just turned 4 and has Netherton's syndrome. I can so relate to what you say: I am the one that always has to fix everything for my children and there is no way I can help it go away for her. I felt the same frustration at being helpless to fix this. It does get easier. In the beginning, I couldn't stop thinking about it and worrying about it. The great thing is as your granddaughter grows and your relationship develops and you fall even more in love with her you won't think about the lamellar so much. Do you want to email privately? Maybe we can talk sometime? Where are you from? I am in New Jersey. Email me: Stephanie.Dexter@kraft.com. Look forward to hearing from you!
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