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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.

Tuesday, June 14, 2011


       Siblings are often over looked during diagnose time and thru the course of the disease.  Lyndsey was afraid to leave me. Part was to protect me and part was she was afraid something would happen to her.  Lyndsey was my little red headed, high spirited child that was ready to conquer the world...To most she still displayed these amazing qualities but every now and then these little insecurities and fears would resurface and made life hard for her.  After we got the Duchenne part of the diagnoses to the Muscular Dystrophy Lyndsey was going to have to give a sample of blood to check if she was a carrier of the disease. ( Females carry the gene for Dmd and males actually get the disease.  More on this later.) I had given my sample of blood and it was Lyndsey's turn. They had a nurse and doctor try to get a sample and Lyndsey became hysteical  fighting and screaming “No. No”. They added another nurse to the crew to help. They were still not able to hold her down. They asked me to help and calm her down. I tried to talk calmly and softly but she refused and shouted at her full lung capacity , “If you don’t take my BLOOD…. I want be SICK.” over and over again. (She thought Dake got sick because they took his blood so she did not want to be sick so she did not want them to take her blood.)  I have to leave because it was tearing me up emotionally. The doctor puts her in a straight jacket and she gets out of it.  After some long torturous minutes they somehow were able to get what they needed.
  Lyndsey’s blood test came back telling us she is NOT a carrier.   I am NOT a carrier either.  This makes Dake's body the creator of his own disease. He is a sponteous mutation. This is extremely rare and unusual.
  In third grade, (3 years after Dake’s diagnoses) she had a difficult time leaving me every day for school. Her teacher was so compassionate and worked with her to reassure her everything was fine.  It was so difficult having to leave her every morning as she begged me to not go.
So she went into her classroom crying and I left in my car crying.

Gracey has never known Dake as a walker.  She became a part of our family when he was 15 years old and already in the chair full time.  Her perception will be so different from Lyndsey’s.

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