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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.

Sunday, July 22, 2012

Wheelchair Under the Weather

We woke up to Dake's chair not working.  We can not get the joystick to work. Maybe the moisture from all the rain?  Maybe just completely worn out.  Phillip and David started disassembling the joystick and now parts are laid out on the table like a surgeon performing and intricate surgery. Lyndsey and I have  researched the Baltimore area wheelchair repair places and a place tor rent or purchase a manual chair for temporary use. We can not get his chair to go completely into neutral.
 Lyndsey found a drug store with a manual chair several miles away. (after calling 17 places). She, Gracey and David are on that adventure currently riding and switching public buses until they find the destination. They called and are on their way back but need us to look a couple of connection points.  We had to purchase a portable temporary wheelchair.  Poor David had to lug it all the way back in a box on the public transportation. 
They  returned now and we have to assemble the new chair. We had to borrow tools from the hotel maintenance. We got him set up and we went to eat breakfast finally at 1:00 in the afternoon.

I keep repeating the follow post to myself over and over again.
                       "God will not give you more than   
     you can take, He may make you bend but you  
                              won't brake........"
                     Group One Crew, HE SAID

I called several repair places and called emergency numbers. I had one man return our call only not to care.
I called our local repair guy, Mike Provines with AAA Home Health and ask if he could over night us a joystick.  We sent him pictures and he is going to do his best to help us out. Thank you, Mike!
If this doesn't work we will have to ship the wheelchair back I guess?
Dake is not comfortable which cause more stress on everyone.
Please Pray for US ALL.
Phillip is flying back to Alabama tonight so he can get back to work tomorrow.

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