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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, July 31, 2012

Home Ever Loving Sweet Home

Home Ever Loving Sweet Home

Home is so nice and glad to be here.

I have to step back just for a moment to share this story.

We have been traveling back and forth to Baltimore for over a year now.  We travel with the same airlines because they fly out of Huntsville and they are the least expensive.  The saying you get what you pay for is so true even in airfare.

The crews of the past flights were always impatient and let us know they were ready to go when the aircraft landed.   We are always the last ones to depart the plane because it is easier to get Dake off the plane when all the others are gone. (Plus we take more time to him get off, so no one has to wait.) The crew, (pilots, stewards and stewardess), has to remain with the plane until everyone is off the plane including us.

In our experience, most of the time it takes a while for the airport crew on the ground to bring an aisle chair for Dake to exit the plan.

Then, usually we have another wait for the ground crew to get his wheelchair to the door of the airplane so we can transfer him from the aisle chair to his wheelchair.  The crew in the past has added to our frustration because they are ready to get to their destination and we are “holding” them up.

One time a captain was so ugly about having to wait and made a comment loud enough for us to hear.  David let him know he did not appreciate his comment. A few words were exchanged and the captain threatened to have David put in jail.  (This was not a pleasant time.)

But on our last trip home we are not sure if we were all hallucinating from exhaustion or maybe just delirious from the calamity of events from Baltimore.

As we landed we stayed in our seat and waited as we normally do but the next few minutes were not the usual.

As we sat comfortably chatting as the last passenger exited the plane. The smiling friendly steward came down the aisle and pulled our luggage from above in storage. He stated that we would need to just take care of ourselves and they would get our luggage and carry it off the plane to where we would meet the wheelchair.  I was speechless at first and replied,” Oh it is ok we can get it.”   He insisted to go through with his plan. “Whoa” that was nice and never ever happened before.

Then the ground crew brought the aisle chair and rolled it carefully down to our assigned seats. We are about midway back. It will take two and sometimes three people to get Dake situated and secured in this tiny thin chair. (Dake has no core strength or the strength to pull his arms in while rolling down the close tight aisle so someone has to hold him so his arms do not flop and get caught on the seats as we exited.)

It was late at night and only one ground crew came to help with Dake. (Usually two crew members come). David does all the lifting and gets him to the aisle seat and the ground crew guy was behind the chair getting the straps straighten so we could get him secured. The Captain of the plane come to us and gets down on the floor on his knees and gingerly straps Dake in his chair and then he backs out and holds Dake’s arms as they exit the plane.  I almost cried at everyone’s kindness. This just never ever has happened to us before. I am in shock.

Then the whole crew waits with us as we wait for his chair to be retrieved from beneath.  I am not sure what I looked like but when there was some trouble with the chair one of the stewardesses came over and hugged me.  Nothing was said just a kind hug. Finally the chair arrived and we all left together and as we separated I profusely thanked them but I could not adequately get my words out. They waved and acted like it was no big deal. Wow.

The kindness of those strangers touched us and we will never forget them.


A little kindness goes a long way but an abundance of kindness goes to the HEART!



  1. I am sure it felt rather good not having to consider bailing David out of jail on this trip.

  2. Absolutely Kent, it was rather intense!......