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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.

Saturday, May 28, 2011

Phillip Comes to Visit

Phillip has come to spend the weekend with Dake. Phillip lived with us for three years. He wantted to spend more time with Dake.  Dake and Phillip have been friends since they were both six.  They  meet soon after Dake was diagnosed.  We moved two doors down from them after Dake was diagnosed because we needed a pool. The best therapy for a Duchenne Muscular Dystrophy boy is swimming .Swimming and being in the water takes the weight off the muscles. (An interesting tidbit: Boys with Duchenne Muscular Dystrophy tend to float more then the average child.  So we had to weigh him down with  aqua weights to keep him from floating.)   So when they actually stop walking they can revisit the experience in the water.  We moved into the house down from Phillip and his family and connected with their family for a lifetime. Rita, Phillip's mother, was a lifesaver for me during this difficult time and while we were trying to adjust to the diagnoses.  Philip's brother, Evan and Lyndsey are the same age. The four of them were inseparable for years.  If they were not together at our house, they were at   Rita's house. The bond between the four of them last strong today. Theycontinue to be important friends in each other lives even with distance between them. Their friendship is a beautiful thing to watch.

Ok, I am suppose to post something mean about Dake today because he kept picking on me today and I told him if he did not stop I would post something embarrassing.  Ok, here it is .....sometimes during the day when he gets sleepy Dake likes to go to the garage and take a nap in the warmth of the a cat.  .....meow Dake....

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