Please help a friend in need.

I belong to a great group on women online. We chat about our multiples and give advice and much more at times. The reason I'm writing this post todayu because of a friend in need. Her twin girls we just diagnosed with a horrible disease. I just copy and paste some of the story here for you all to read. Our group has set up a fund to raise money to help the family. I know times are hard but what little you maybe able to help. Jamison and I give thanks everyday how luck we are with our three healthy babies. Here is the story.

Both girls have been diagnosed with Werdnig-Hoffman disease. Here is the wikipedia article:http://en.wikipedia.org/wiki/Werdnig-Hoffman_disease. It is a rare genetic disease that is untreatable. We are going in Monday to test our blood as well to see if it is something we passed down to them or if it was a mutation they experienced.

They have the most severe form. Their lungs are going to slowly give out b/c 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 b/c their muscles just can't take it. They might never talk b/c 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