My heart breaks for this poor family http://sweetgirlies.blogspot.com/ . I met her on an internet forum and her and her husband just lost both of their twin girls within a day of eachother (Sunday & Monday) They were diagnosed just 1 month ago with Werdnig-Hoffman disease. This is how she described it..."They have the most severe form. Their lungs are going to slowly give out because the muscles will not be able to help them breath anymore. They are both on feeding tubes, oxygen at night and monitors. They will never be able to sit up or hold their heads up because their muscles just can't take it. They might never talk because they have to choose between using their energy to breath or to do other things and they instinctively know to breath. Their brains are fine and they do so well interacting with us and each other. They love to be read to and have toys in front of them, they just can't reach them and hold on to them to play with them on their own."
No one expected it to happen this fast. I can't imagine losing even one, let alone 2 children within days. If you have a moment, please say a prayer for this family, they are hurting so much right now.
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