I was told this morning about a friend of mines little baby girl. She was diagnosed with SMARD = spinal muscular atrophy with respiratory distress the week before Thanksgiving. Her diaphragm was paralyzed and she could not breath on her own anymore. Well their precious little baby passed away Sunday after they had to make the hardest decision of their lives and take her off the ventilator. With SMARD they don't expect children to live past 1. They had to choose to either let her live and watch her deteriorate or let her pass peacefully. I have read through her blog and just cried. I know that they are going to need all the prayers to get through this that they can. Her blog is kendraandryanwebster.blogspot.com. I can even imagine the pain of losing a child. My prayers are with them!
1 comment:
Hello! Please let your friend know that there is info out there on how to help her little one w/ SMARD. A couple great sites are: www.smaspace.com, www.smasupport.com, and www.fsma.org. Please let her know that she can contact me as well if she has any questions or needs someone to talk to. And feel free to visit my daughter at: www.our-sma-angels.com/jenna or her updates at: www.jjsjourney.com
~Mary
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