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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, July 23, 2011


        Saturdays are the best. It is the only day each week we do not have anyone come in our house at 7 am  or before that is not kin to me or personally invited.
      I appreciate the help with Dake during the week and never want to indicate I do not .But Saturdays make me feel like we are just an normal ordinary familly. I can sleep a little later without thinking it is time for someone to enter the house. I guess it its the privacy issue too. Dake's helpers enter as the arrive to our house. I had set it up this way because sometimes in the school mornings I am busy helping Gracey get ready and it interferes with me getting her ready on time if I stop and answer the door each time they arrive.
      Anyway David took Gracey out for their regular Saturday morning "date" to Buger King for breakfast.  David takes this time to have some one on one with Gracey each Saturday and lets me sleep a little late...(.He is so sweet.) (He has done this since she was five years old.)
       This morning soon after they left Dake called to be turned from his bedroom downstairs.  As I came down my stairs to go to Dake's room someone knocked on the front door.  Luckily I had put my clothes on because my nephew and niece had spent the night and I did not want any embarrassment with half clothed bodies....I went to the door and I could barely move (David and I built a new fence yesterday) because I was sore and stiff  (and old). I have the" sleep in" contacts in my eyes and because Dake called I did not stop to put drops in my eyes so I will blinking constantly trying to lubricate my eyes enough to see. So I answer the door and it is two sweet people trying to
"sell  Jesus" to me.  I am sure one look at me with my unbrushed hair, stiff stammering moves and my blinking eyes they probably thought she really looked like a soul who was lost. I explained where I attend church and sent them on they way. (Sure would have loved to hear what they said after they left me....hahha!)     
           Dake called again and after finishing getting him adjusted there was another knock on the door.....oh well, not a relaxing Saturday this time.......

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