Calling on those of you who believe, as I do, in the power of prayer. In a very short period of time, our daughter Emily has deteriorated more than ever before. She went from being in a wheel chair 60% of the time to now 100%. Her personality has taken a hit as well, and her speech centers seem particularly affected. Her native curiosity that in part defined her appears to have left us as well. Monika and I knew this day would come to Emily, as a Juvenile Batten Disease patient, but we have been fortunate up to recently that her decline has been measurably gradual. Today we went shopping for a van that can accept a wheel chair. The next few months are going to be tough on all of us, including Em. She knows that something is not right. So, I ask you keep Emily in your prayers as well as her sisters, Monika and me. We have been told that a clinical trial on a drug to arrest the progression of the condition should occur in the next few months. Please join us in praying that the trial finally does occur. And please consider supporting research into Juvenile Batten Disease. beyondbatten.org
Posted on: Thu, 07 Aug 2014 01:20:36 +0000
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