[quote][Thank you for sharing your story. I can not imagine what it feels like loosing your child! To me, your story is allso very touching because I have a four and a half years old daughter with Fryns Syndrome! Like your daughter,she was very sick when she was born, and she stayed very sick for about a year and a half. Today she`s a healthy and a happy little girl, worked her self out of the feedingtube a few months ago, and she allso learned to walk. I`ve just found out that there`s other with Fryns that`s alive, and this is the first time I read obout others that`s been affected by Fryns Syndrome. I`ve felt so alone, and kind of known so little about this syndrome.
Hope you and your family are doing well, thank you again!