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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.

Wednesday, September 14, 2011


      When you children go off to college or other adventure and return home things are always different,  My oldest daughter returns home after being gone for three years and notices changes in the dynamic of our family. Changes to us that are subtle and gradual and we don't notice anymore.
       For years David and I have been an advocate for Dake.  (Not only with the Muscular Dystrophy but with his very challenge dyslexia, as well.)  Lyndsey was always there, even as small child supporting and cheering for him and the family. She is pretty remarkable, even if she is mine.
       The other day I got on the computer and noticed all these tabs open to different agencies to help with a variety of services.  She told me that her Dad and I needed help and we should utilize any and all services. I said I thought we had and many times the answer is NO.  She said that is not good enough. (She has red headed spirit!)
 I never thought we needed an advocate.

1 comment:

  1. I agree with Lyndsey: Take all the help you can get. Let her be an advocate, not only for Dake, but for you and David as well.
    Red heads ROCK, they know how to get things done, and they don't easily accept 'no' for an answer.
    :) Go Lyndsey!