I'm so lucky

I have had some great support and advice from family and friends ever since being pregnant and giving birth to two very healthy twins. Early in my pregnancy, I came across a online community for Mothers of Multiples (MoMs) and they welcomed me into there world as if they knew me forever. Now, I love to give advice to the new mothers that come with questions and give support.

One of the MoM's just got the worst news of here life her 5 month old twins, Syndey and Carynne, were diagnosed with Werdnig-Hoffman disease. This is a disease that has no cure and most do not live past the age of two.

In their moms words:

Both girls have been diagnosed with 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.

J 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.

The only thing I can do for this family was donated to a fund that has been set up in their honor. If you can donate also (even just a dollar) to a help this family, please go here donate. Please also keep this family in your thoughts and prayers.