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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, May 23, 2011


Dake has not been able to turn over in bed since approximately 2001. David and I use to alternate nights turning him during the night. We can turn him up to 3 - 15 times a night. Now that Dake is 70 pounds heavier I can not turn him. He is to heavy for me physically to turn. I can adjust his arms and legs for him because he is not able to move them on his own but not turn him. David now turns him all the time. I hate I am not able to help David with this anymore. David is truly an amazing man. You would never know what time and what sacrifice he puts into his son. He turns him all during the night and then gets up at 4:00 a.m. on an average day.
Dake did not sleep well last night. I don't know for sure if it was nerves or the travel or the strange bed. Probably it was all the above.
Despite the rough night, Dake did wake up well this morning and was ready to get the show on the road.

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