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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.

Thursday, May 26, 2011

Official Word

We received official word today Dake is eligible for the study at Johns Hopkins Hospital. This news is bitter sweet. We pretty much knew going in he was eligible but this also confirms, with a second opinion, his heart has declined enough to participate. Oh well, I cannot dwell on this....thankful for the first time in a long time we have some hope again. This is the first study in about 15 years that has offered us hope.. It is far from a cure but it is hope. Days without hope are hard. Dake has suffered with DMD for 21 years that we were aware of it. The last 10 years have been the hardest.

Right now the attentive dates are in mid July for him to enter the hospital and start the administration of the drug or placebo.

Dake has needed a haircut for the last two weeks. Dake is VERYpicky about his hair and takes pride in how it looks. I think, in part, this is one thing left he can control. I use to cut his hair all the time until I finally got to the point he was driving me crazy. He gets in the OCD mode when he is getting a haircut. Getting haircuts for him have always been an ordeal. When he was young, he insisted it hurt when the hair was getting cut. Drama...drama....I was ready early on to let him be a hippie and grow it long. David was not so much in favor of it.

Today he really wanted to get it cut but is still a little tired for the trip. He did not want to get out and get it cut. He asked me if I would cut it? I agree with a few stipulations.
1)Do not repeat the instructions to me of how he wanted it. Part of the OCD part.
2) No complaining on how long it took me.
3) no mirror until I finished. (Big NO! NO! to have him watch me cut his hair.)

He agreed and I cut in outside on our deck as he watched Gracey jump on the trampoline and her chase the dog, "Crayola" (our wild dalmation) and "Mona Lisa" (our calm great dane). This helped take his mind off what I was doing. Thanks Gracey! All in all he did well...and he was pleased.

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