I am a child of God, a wife to a super great guy, and a mother to the two most beautiful little boys. Our first, Gabe, was stillborn at 37 weeks. He was only here with us a short time, but we treasure every single moment. On Feb 27th, 2009, we had Jonah, who was born with an extremely rare genetic skin disorder called Epidermolysis Bullosa. Jonah spent 32 scary days in the NICU, but is now at home! He has been diagnosed with Junctional EB, a very serious form of EB which CAN be fatal. The experts are fairly confident Jonah is non-Herlitz (less severe), although the biopsies were inconclusive. He faces a life of painful blisters, hair, nail, and major teeth issues, as well as the possibility of respiratory involvement. Jonah stays bandaged from the neck down. We suspect EB is the cause of Gabe's death. We know that no matter what happens with Jonah, God will be glorified. We can't wait to see Gabe in Heaven and can't wait for Jonah to meet his big brother a long, long, long time from now after he's old and gray and lived a long, full life. Please pray for a miracle for Jonah. We are.Patrice's blog has become one of my favorite to read, as difficult as it might be at times. She deals with so much pain, heartache, and stress over Jonah's condition on a daily basis, and I love that she is pretty transparent on her blog, admitting when she's at a low point instead of glossing it over with funny stories and cute pictures (though there's plenty of that too!).
Anyway, in honor of Jonah's first birthday--which is no small milestone for an EB baby--some friends of Patrice are hosting an online auction to raise money for DebRA, the EB research association. The auction will run February 23-27, and it sounds like there are going to be a lot of great things to bid on. A sneak peek was posted on Facebook, and let me tell you, there will be some CUTE stuff!
If you are interested in the auction, help spread the word by grabbing the button above and posting a link to the auction site. Every little bit helps fund more research to work toward a cure for this horrible disorder. I'm praying for a cure to give these little ones a brighter, pain-free future. Will you join me?