Patrice
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| Introduction | 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. |
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