Being a mom (or a parent) is a very special, life-changing thing. Being a mom of multiples has its own special corner of the world. As most of you know, I belong to a fantastic support group online of Mother's of Multiples. I'm so sad to tell you all that one of our members (Brook) has received devestating news. Her identical twin baby girls have been diagnosed with Werdnig-Hoffman Disease. Here is the wikipedia article:
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.
The diagnosis of Brook's girls has hit me very hard. Brook and I have discussed feeding tubes in the past because she feared one of her daughters may need one, not knowing about this disease yet. She has supported me through all we've been through with Jax, and for this news to come is devestating to our board of moms. This group of women span the country, and yet are the closest thing most of have for quick advice, long conversations, virtual hugs, virtual shoulders to cry on and most importantly advocates that celebrate eachother's victories. I've cried at my computer to these women and this particular woman more times than I care to admit.
We have pulled together to try and help Brook and her family. We have decided to create a baked-goods calendar where we will each take a turn each week to send some baked-love, raise money for professional portraits for memories, and most importantly, raise as much money as possible to give the family. They have medical treatments that need to be paid for and we would like Brook to be able to take a leave of absence from work to spend this time with the girls.
I have set up a donation fund in honor of Brook's family. I have included a stamp with a link on the side of this blog if anyone is interested in helping out. I know economic times are hard for everyone right now, so even the smallest amount would be very appreciated, and touch this family. If you're not able to donate monetarily, please say prayers for this family. Let's all squeeze our babies a little tighter tonight...
...and be thankful for moments like these.