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Welcome to Dake's Blog

This blog is designed to give you updates on Dake as he enters his journey to Johns Hopkins/Kennedy Krieger Institue Center in Baltimore, Maryland. This is a clinical trial in research focusing on the heart of Duchenne Muscular Dystrophy patients. This is not a treatment, it is research. Dake chose to participate in hopes for himself and for those who unfortunately follow behind him.

I will also share a little into our lives. Dake wants his story told....

The good, the bad and the ugly......

For more information on the research at Johns Hopkins on Duchenne Muscular Dystrophy scroll to bottom of the blog.

Tuesday, July 12, 2011

Today We Take Off to Baltimore

We leave for Baltimore today.  Got everything pretty much ready to go and trying to get details for Gracey settled. Hopefully we will get there and settle down for the night. The day will start early tomorrow.  David is not feeling well so it will be harder all around since he can not really take a moment to recoup. He is having headaches lately....we checked his blood pressure and it was elevated just slightly so we a keeping an eye on it.  David does not usually get sick but  definitely does not have headaches. The heat could be a factor possibly.  Being a caregiver you do not have time to be sick or feel bad. The show must go on. Pray he feels better. 

Dake goes and gets his medication starting tomorrow.  He will either get the actually medicine or a placebo. We will not know and even the doctors will not know, only the computer.  After six months and lots of evaluations and test we will know if he had the actual drug or not.  I pray that the best for Dake happens whatever that is. 

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