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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, July 5, 2012

Dake's NEW Wheelchair

Dake’s new wheelchair

We have been working since December of 2011 to get all the paperwork finished  and approved for Dake’s new wheelchair. The last chair cost $27,000.00.  He usually gets a new chair every five years.  When he was in high school Lyndsey got a  used car  when she started driving. It cost approximately $5000.00  Dake got a  new wheelchair when he was a senior. She was jealous because her dad spent only $5000 on hers and 24,000.00 on his. She was kidding ,of course. Insurance  and several agencies equal a wonderful thing.

David described it best when he said “he has the Cadillac of wheelchairs.”

His new wheelchair and his last three wheelchairs have been  a Permobil. Permobil is a Swedish company with a headquarters in Lebanon, Tennessee. Dake always wishes a Swedish girl would be included. (I am sure that would be an extra fee.)

 Dake, Lurch, (his service dog) and I flew when Dake was 13  years old to a physical therapist, named Laura Case,  at Duke University whom specialized in Duchenne Muscular Dystrophy. She told us then what we needed until he would be twenty years old. ( Which is the usual lifespan of a Duchenne boy)? Now at 28 years old, it is a great design for him still today with just a few added adjustments to fit his body. Dake decided on the color orange for his Dad. ( Tennessee fan) It was the first time it has been an option for a color.  It has seven motors. It  tilts  (which helps with breathing and comfort), reclines, leg rest that raise up and down, front wheel drive, has a seat elevator, (Helps him adjust to the table he pulls up to in a restaurant or school. It helps in a place like Wal-Mart when an item is up high on the shelf. It aids in self-esteem because he can be at eye level when having a conversation. ) This new model of Permobil has a new computer system on it which is ….awesome  It has an indoor and outdoor mode.  It has a pedometer on it that keeps up with his mileage.  It can go up to 6 mph…..(I think I have a new running coach. Not sure these short legs can keep up with him.) And his favorite part is it has a clock. I know this sounds simple but I have duct tape, zip tied, and glued clocks  on his previous chairs. He has challenges with time. Yahoo! No more pages over the Wal-Mart intercom.

Seven months later Dake heard via email his chair was in but still had to be put together. Two weeks was the approximated time frame for delivery. He was so excited.  Finally the day arrives…..Mike the wheelchair guy rolls in the beautiful bright shine new RED chair.  Dake says nothing about the color. I came in later and admired the beautiful chair as he showed me all his new gadgets…I noticed it was red but thought he had already it. When Mike left I asked Dake about the color. He said he liked it so he did not say anything.

Red verses Orange….Yikes….kinda hard for an orange fan to swallow.  It is more like a cherry red.  And  Dake was happy and that was what really mattered.

This chair came in with a total of $36,000.00

Now …if I could  only program it to clean the house……

Dake looked like I have seen his face on Christmas Day. He later told us he was caught up for the next 10 Christmas’.

We are so, so, so very blessed and thankful  to be able have this elite type of equipment for Dake.

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