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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.

Friday, June 24, 2011

BAKE for DAKE Cookbooks vol. 1 and 2

       Becky Bowman told me the she found a copy of the first Bake for Dake cookbook while going through her grandmother'sthings after her funeral.  It has been awhile since I had thought about either of these two editions of the cookbook.  The first one was put together soon after Dake was diagnosed. Lyndsey helped as much as the adults going thru all the recipes collected. Betty Johnson, in Decatur, from Austinville Church of Christ was our optimistic cheerleader and promoted the cookbook among all she knew...she knows everybody. ( Betty is a dear lady who will forever be special in our hearts. She was even a helper to Dake in school in third  and fourth grade. No baby in the nursery at church could refuse her famous rocking method until they were asleep or under her "spell" of contentment )

  The research program Dake was in at age 9 turned out to be a nightmare in motion and financially.  Thankfully we found out enough information and pulled Dake out of the program before harm came to him. When you participate in research the enrollment is suppose to be free. Dake was one of 30 boys in the world to join the Myoblast Transfer research. The phase he participated in was the to phase to be  injected over 200 injections from the was down to reverse the disease. (or so we were promised.)  We were promised alot.......  not' bore you to death', I will spare you some of the nightmare.
 Long story short .....the doctor said to continue in this " promising" research each family had to put $100,000.00 on the table.  We were only about $100,000.00 short.  So numerous fund raisers were launched on Dake's behalf.  Kim Bennett started "Loaves of Love" and sold hundreds of loaves of homemade sour dough bread.....Thanks so much Kim for all your hard work. We had a giant yard sale for a month and the whole congregation at Austinville donated items for helping Dake. People in our lives were amazing and so supportive.  We could never thank them enough.

   We gained knowledge that the doctor doing the research was doing some questionable things and even causing some harm to these boys. We had gotten in about a third of our money and we decide soon after the deposit, it was no wise to go forward with Dake in the research. This was a very political situation between us and the doctor and his team. It was not a fun time and we were questioned repetitively as to "why?".  A few months later this doctor was "run out" of the country..  Today he is in Malaysia working on boys with no government to protect them. 

 The two editions of Bake for Dake,,,,,
 Dake around the time he was diagnose at age six.
 Lyndsey at age 5 when Dake was diagnosed.
 Dake and his service dog "Lurch" in high school.
 "Lurch" was a rescue dog, part labrador retriever and great dane.  He was train for 18 months before becoming a part of our every day lives. He was rescued when someone found him in a ditch after being shot. " Lurch" recovered and paid it forward... and rescue us. In Memory of" Lurch "in our lives from 1995-2002.
Picture of Lyndsey when the second edition of Bake for Dake and Lurch too! in high school.

    So the first cookbook was done to help with money we lost because we pulled out of the research.  But honestly we were just thankful money was all we lost  because of the information were had heard. Dake was fine and that was all that mattered.  The money was gone but we could slowly rebuild.  The second cookbook came when Dake was in highschool and he had his service dog, "Lurch".  The Family and Consumer Science teacher wanted her class to take on a new project. She ask me if they could take on the second  edition and include treats for dogs. We agreed and Bake for Dake and Lurch Too! was born.

If anyone is interested in a copy of the second edition of
Bake for Dake and Lurch, Too! 
we still have a few copies....all proceeds will go to expenses in Dake's traveling back and forth to Johns Hopkins in Baltimore, Maryland.
Each copy is $20.00 each
please add $3.00 for shipping if you need it shipped to you.

Thanks so much!

1 comment:

  1. Hello Lynn, Dake, and family. This is Shane, who donated some tissue way back in the day as part of that research effort. Wow, that was a long time ago, wasn't it? I began reading your blog a few weeks ago, and it's been very interesting to hear how you guys are doing. I hope things go well with Johns Hopkins. Please take care.