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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.

Monday, January 23, 2012

First day of Testing @ Johns Hopkins

The flight here was very smooth and we landed to the sight of
SNOW....which is always exciting for us.
  Dake started out with a rough day as the head of IV and several nurses from all departments attempted to get blood from him. They finally made to his foot but still to no avail ...the blood remains in his body. But despite those failed efforts good news was around the corner. His grip strength had improved in October at the three month mark.and today revealed he had a strength increase even more in his grip at this six month mark......Baby STEPS BUT we will take IT! YES!!!! YAY!!!! 
Last time at the first MRI Dake had great difficulty with the task of breathing and holding his breath and the added grills put on his body. At the beginning in July what took 2 1/2 hours should have taken about an hour.  Today he completed his MRI in an hour and he did soooooo awesome with taking the test. We do not have the results yet but he was relieved to get the dreaded test behind him. I asked him what was diffeent this time and he said he just kept reciting the Lord's Prayer over and over again...He said he would forget where he was and start again.
Tomorrow the cardiologist will attempt go into Dake's main artery in his leg to get blood needed.  This is extreme and must be performed by a cardiologist. After consulting with his cardiologist he suggested this is probably the best way not to make him a human pin cushion. So in the morning this will be performed....
Today the actually medicine was adminstered.  and we will see.......


  1. Glad his day went fairly well all things considered.

  2. Love you Daker! Glad you're sharing your experiences. Stay strong buddy!