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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, June 20, 2011

Prayer Bracelets

Do not forget if you haven't gotten a "Heart of Dake" bracelet yet just let us know and we will get you as many as you need. Thanks to Tanya Griffin for her donation....(She would not want me to reveal that part but oops!)  You can email, call or tell us in person and we can set you up.  The bracelets are a reminder to pray for Dake as he goes through this research. As I have state before, I am not sure which way to pray. Whether he gets the drug or have him only get it in the sixth month phase.  Selfishly on my part because I feel if he gets it during the sixth month time frame then we could see from the ones before him if there were any problems.  This is kind of unfair because Dake has gone into it full force.(I need to be more like him.)

        I do pray, however, whatever God wants that this is what happens. But I also ask God to help David, Lyndsey, Gracey and me deal whatever lies before us. I cannot do it without God helping me.  I must admit I could not pray this for a long time. It was a prayer that did not happen over night or even after several nights.   I realized that if I get my selfish way (and sometimes still have selfish times) that Dake was to be health and well but God's plan did not get fulfilled, I would have let Dake down as a mother and a christian. Kind of a serendipity thing, I guess.  If I interfered with the course or plan for Dake and the people Dake has met in his journey never happens then nothing good could happen.
   Now please do not get me wrong. I DO pray for Dake's healing but only if this is God's plan for him. Prayer has definitely been a journey for me personally.   I remembered when we first got the diagnoses.  I could not pray.  I guess it was kind of like giving God the silent treatment but more I was in shock and the words would not and could not come. But because of the prayers of others I was able to speak to Him again. Because of this experience I realized that when a prayer request comes in from someone hurting never underestimate what your prayer may mean to  that person. And never forget to pray for a request. It is easy to do especially if you do not know the person very well. You are sitting in church and you hear a request.  You have good intentions but soon "life"  starts to happen.  You don't mean for it to happen but several days pass and you have forgot to have a one on one time with God and reply on the request for someone.   We have all done it help remember we have this bracelet for Dake to be a reminder to have a moment with God. Our family thanks you ahead of time for your moments you take on Dake's behave.

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