For several months now I've been following the blog of this family. Patrice and Matt are a sweet young couple from North Carolina who have two sons, Gabe and Jonah. Though we've never met, I've been touched by their story. Both of their boys have the genetic disease Epidermolysis Bullosa. EB causes the skin to blister at the slightest friction and then slough off leaving painful open wounds. EB babies are at a high risk for infection and other complications due to external and internal blistering and wounds. Because of EB, their first son, Gabe, was stillborn at 37 weeks. Jonah is nearly a year old and has battled EB his whole life. Every day his parents wrap him in a protective layer of gauze to protect his skin. EB is a very difficult disease and as of right now, there is no cure for it.
The organization DebRA raises money for research and provides assistance to families with EB children. At the end of this month, a friend of the Williams is hosting an online auction to celebrate Jonah's 1st birthday. All you have to do to enter to win an item is visit Jonah's EB Auction Website and leave your bid in a comment anytime between 12:01am EST on February 23 until 11:59pm on February 27. Because all the aution items were donated, every dollar raised will go straight to DebRA. The auction items range from jewelry to gift cards from some great stores and restaurants. So go on over sometime between February 23rd and 27th and see if there's anything you'd like to bid on.
Also, for passing this information along, you're entered into a drawing for a Target gift card. If you'd like to write your own post about Jonah's EB Auction, visit the auction website and follow the instructions to link your post and be entered to win.
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2 comments:
Did you see the hint on FB today? Something to do with Chick Fil-A! Looking forward to bidding! :-)
So, did you wind up bidding on anything? I "won" a beautiful necklace!! I am so excited! Can't wait to get it and wear it. Another way to spread the word about Jonah and EB! :-)
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