Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Thursday, June 4, 2009
Is this thing on?
Birthday party #1 with MIL on birthday eve. Party #2 an impromptu gathering with our favorite family on the Big Day. And gearing up for party #3 with my family Saturday. Who knows, I may even drag my unwitting family to church, to top it all off. Muah hahaha!
Also: current updates in research include from the last 6 months
-identifying the true human intestinal stem cell (Lgr5)
-regenerated stomach and small intestine from a pigs own cells
-combo stem cell and gene therapy cured a HUMAN genetic disease in vitro
God is good, all the time. All the time, God is good.
Thank you for answering my prayers, stoking the fire of both my hope and my faith, and giving me the strength to keep living and loving the miracles of this life. I continue to believe that a solution for Bo may be in sight during our lives. And that we will continue to celebrate each day we have together, regardless of our proximity to that monumental discovery.
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