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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.

Wednesday, October 24, 2012

Even Kutless

Even if the healing doesn't come......God is Good.

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Equipment for Handicapped For Sale

 Our sweet son passed into his heavenly home on October 15, 2012

Soon the story of Dake's last few days will be posted for those who have asked for more details. These details are not easily coming so please be patient with us as we process our new reality.
We need to sale a few things to help us move forward. We donated many of Dake's equipment. We donated his bed, shower chair, his older wheelchair, (not new one, we are selling it for 1/3 of the price and will have details.

2002 GMC Savana,
white exterior, tan cloth interior,
dvd player, TV, VHS player, CD player, cassette player, radio
 middle bench seat folds flat to make a bed,
van holds wheelchair and 6 to seven additional passengers,
 braun lift in rear., captains chair for passenger next to wheelchair passenger,
 front and rear a/c.,
 mileage is 169500 approximately.,
 v 6 engine.
Tires in good confition, oil changed regularly.
call  256-503-3494 or 256-777-4101 or email
For Sale $5000.00
(A used Braun lift is approximate $3000.00 and a new lift would cost approximately $6000.00 and then the cost of installation is on top of that price,)

Permobil Wheelchair
 Brand new Permobil wheelchair with all the things need for Duchenne Muscular Dystrophy or others with multiple special needs. We traveled to Duke University, in NC, in 1996 and talked and worked with a physical therapist whom specialized in Duchenne Muscular Dystrophy.
The chair carried him beautiful for all the needs upto his end.
    Dake’s chair has only been used for six months.
 Top of the line, computerized, has every feature ever needed.
It has a chair elevator which allows the passengered to raise up and have a conversation with someone standing. It helps the passenger to reach unreachable items above his or her head.It help the user adjust to fit under any table in a restaurant with no problem and etc.
  It cost us 30,000.00, we are selling for $10,000.00
.We would love to give it to someone in need but it is not even finished being paid by us on our end.
The chair is a beautiful red.
If pics or more  info is need... please do not hesitate to call or email.

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!


Tuesday, July 24, 2012

Going Home Ever Sweet Home

The Cardiac MRI was run today on Dake but they were not able to get all the details they needed. 
 Dake was worn out from the manual chair and not being in his own bed.
The doctor told us they were able to get the core of the information needed for the research. Woohoo.  Home here we come.
 The test was run at 7:30 this morning but we would not be able to fly out until 8:25 tonight. This was  the earliest flight we could get. We were still hoping the new joystick might arrive today so we would not have to push the 357lb wheelchair thru the airport.  Especially since the wheelchair was not wanting to move easily.

We were also told this morning we may not get reinbursied for our hotel, flight, food and wheelchair that we had to purchase while waiting on the piece of equipment that never did get repaired.
This went over about like a lead balloon.
They had reassured us this was not going to be a problem before we agreed to even stayed.
The main doctor who wrote the research had given his word on the phone that it would be taken care of if we stayed.
 Needless to say we were not happy.
 We will hopefully find out for sure soon.

Dake, Lyndsey, Gracey and I went to see Brave.   The movie theater is next to our hotel.  David was waiting in the lobby
for the UPS man to walk thru with the new joystick that we all had anticipated on.
At 2:37 the UPS man came thru carrying several packages. In those packages was
 the well awaited joystick. HOORAY!
David and the very nice bellhop worked and worked on the chair until finally the familar click sounded and the chair could move.
A special thank you to Mike Provines with AAA Home Health was our hero.  If you ever need wheelchairs or other home health needs Mike is your man....we highly recommend him. He is with AAA Home Health out of Huntsville.
You would think if you are at Johns Hopkins Hospital, you would not have a need to call Alabama for help.

As we are loading up the van provided to take us to the airport a mother with a son in a wheelchair, about 14 years old,  was pushing and tugging his electric chair thru the doors of the same hotel.  I totally recognized the frustration.  We were getting our luggage out of baggage claim at the hotel so we did not have to lug our luggage around all day.
The bell hop who help David was helping this family as well. They were speaking Spanish.  I went over to ask if they needed help in English. The young man said his back wheels on his chair( that was just like Dake's )were not balanced. He would turn on the joystick and only one wheel would make contact with the floor and the other wheel would just spin. He was traveling with two women. One was his mother and maybe an aunt.
When it looked like it was not a quick fix I gave them the wheelchair we had purchased to help them until they could figure their problem out on his chair.
The were very appreciative. I explained it had saved us during a rough time and we hope it would help them.

We are currently at the airport waiting on the time for our flight.....


Monday, July 23, 2012

Still waiting and Lyndsey's birthday

            Today is Lyndsey’s birthday (27) and we are still waiting on the cardiac MRI equipment to be fixed. It has been a bummer kinda of day waiting and hoping we could get called with good news. They only calls have been “not yet” or “can’t get it fixed” .

 The new used joystick is on it’s way and should be here around 2 ish toomorrow. Pray this works.  Getting the 357 lb chair to the airport will be a major challenge. We currently have Dake in a chair we bought at a Rite Aid drug store for $220.00. Dake’s poor body is having a hard time adjusting from a $36,000.00 wheelchair to a $220.00 wheelchair. He is sore and has no control so his spirits are low. (At least we are thankful it is only temporary.)

The last call was from the research coordinator saying they have found another place to do the cardiac MRI at 7:30 in the morning. Woo Hoo….at this point we would go at 3:00 in the morning if need be.

 The only flight we can take is at 8:25 pm tomorrow night. So we will be here a little longer but home is at least in sight.

We all need Snow White and the Seven Dwarves  t-shirts  labeled “Grumpy”. Attitude adjustments needed.

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.