Sydney & Carynne - Diagnosed with Werdnig-Hoffman Disease

There is a great network of women on the Multiples forum at TheNest.com. I don't think I could have made it through my pregnancy and the girls' infant months without their knowledge, experience and incredible support. If I ever made things "look easy", it's because I asked every single question I had of the women here! They are awesome.

Brook is on the forum and gave birth to twin girls, Sydney & Carynne, in August. They have both just been diagnosed with Werdnig-Hoffman Disease. It is a rare genetic disease that is untreatable. 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. More info is available here:
http://en.wikipedia.org/wiki/Werdnig-Hoffman_disease.

It breaks your heart to think of any parent losing a child. It's unthinkable to imagine parents told that both of their children have a terminal disease. She has been told they will be lucky to live past the age of 2. Here's the story and more information about their diagnosis.
http://community.thebump.com/cs/ks/forums/thread/9721385.aspx

Here's a recent update with some pictures (I didn't want to post them without her permission here):
http://community.thebump.com/cs/ks/forums/10066504/ShowThread.aspx#10066504

Our group is raising money for Brook and her family so that it can help with medical expenses and to pay for a professional photographer to take some beautiful pictures of her daughters. If you'd like to make a donation, you can do so below. Thanks so much and please keep Carynne and Sydney in your prayers.
http://tinyurl.com/doublewhammy