Help Needed

I lurk on several board, and several blogs. Today I ran across a horribly sad story that no parent should have to go through. Apparently this young couple gave birth to two beautiful little girls. Recently they were diagnosed with a horrible fatal disease. I am posting their story below, and if you can find it in your hearts to donate whatever you can donate to help these parents be able to spend every waking moment with their daughters without worrying about how they can afford to be off work, I will greatly appreciate it.


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.

Jake and I are going to have to decide how far we want to take this...some babies can make it longer if they're given a trach tube and have a machine breathing for them. At this point we're not sure that we want that kind of life for our sweet babies. We have a lawyer friend who is going to help us draw up living wills so we don't need to make those decisions under emotional distress. I am going to look into taking a leave of absence from work to be with them, but we're not sure if we can do that financially at this point.





to read more about them here's the link to the board she posts on.. http://community.thebump.com/cs/ks/forums/thread/9721385.aspx