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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.

Saturday, May 21, 2011

The Count Down Has Started

We are busy with the normal packing routine today. I have made copies of medical records and such for the days ahead. Dake....he is still in bed and enjoying time in his comfort zone. He will need the added rest for the days to come. Travel is exhausting for him. We plan to leave early in the morning. Our flight leaves at 7:00. We will need to leave earlier than most to get the regular check in stuff but to also get his chair checked in and get him comfortably in a seat on the plane...I always have a little apprehension about flying with his chair. The chair itself is a $27,000.00 vehicle. We have had damage up to $900.00 in the past because the airlines was determined to fold the chair that was not made to do so...

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