Life Technologies, the company Joe works for, has been the driving force in the sequencing project for Noah and Alexis. It is Life Tech's DNA sequencing machines that were used by Baylor's College of Medicine to do the sequencing of their DNA, and they have supported us on many levels. Life Technologies has an annual Global Leadership Meeting, where the top 300 executives in the company, worldwide, gather to go over last year's successes, visions for the new year, etc. They asked Joe to speak on Thursday morning to share the story of Noah and Alexis, our journey with sequencing and the outcome. It was an incredible opportunity.
The kids and I prayed for Joe Wednesday night and God gave me some precious time to lift him up Thursday morning in prayer. God moved in mighty ways through Joe's time and touched many lives. It is our hope and prayer that everyone will have the same opportunity to be sequenced and more rare diseases will be identified through this technology.
When we first discovered that Noah and Alexis had Dystonia, I was adamant about acknowledging the fact that Noah had an MRI that showed brain damage in his ventricles. The damage that was found is a "definitive" diagnosis of Cerebral Palsy. The neurologists told me it didn't matter, that he definitely had Dystonia and they don't like to "double diagnose". I pushed the subject stating that it did matter. I wanted them to acknowledge that, by text book definition, Noah had Cerebral Palsy and Dystonia. This point was critical in my opinion and I wouldn't let it go. It wasn't until later, after speaking with many parents
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posted on January 07, 2011