I'm relatively new to this blogging thing, but I am amazed at how many people I've come across who have stories and situations that touch my heart. I don't know most of these folks personally, but I feel for them and want to support them in the only way that I can -- through my blog!
It was through Heather at Three Under 3 that I first learned about Sydney and Carynne. These 2 sweet girls were born on August 27, 2008 with a congenital disease called Werdnig-Hoffman. This rare disease is a form of spinal muscular atrophy which ultimately leads to the inability to breath on your own. Just last week these 2 precious babies passed away, within a day of each other.
Today, on what would have been their 6 month birthday, they are being put to rest. Please pray for their parents -- I can't imagine what grief they must be feeling at this time. If you'd like to leave them some words of encouragement, you can do so here.
Many of us are wearing pink today to celebrate their lives and to show our support for finding a cure for SMA disease. SMA is the #1 genetic killer of children under 2. If you would also like to show your support in finding a cure for this disease, please sign the petition by following this link.
In the meantime, say a prayer for this family and all of the families out there who are fighting this disease.
And wear pink.
Aw, Emily! You are the best! Thank you so much. I am going to post people's pics and links to their blog in one big post hopefully later this weekend.
ReplyDeleteYour support means a lot to me, I can only imagine it means more to Brook.
Thanks for the advice about the twin sleeping thing. I feel so clueless. It is a whole different ordeal than it was with our first daughter. Thanks and have a great weekend!