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Progressional Diary

May 31st, 2011

by Anonymous on Monday, May 30, 2011 10:00 PM
I was driving to work this morning when I heard a discussion on the radio about taking away communication from teenagers. The lady in the conversation said the absolute worst thing you can do in the eyes of a teenager is to take away their communication. She said they spend hours on the phone and they would see the world collapsing if you took it away from them. Thought: What is it like for my 13 yr old son, Tyler, when he cannot communicate other than texting on his blackberry. These thoughts keep me up at night but also keep me very driven to find the cure.

I hate what dystonia does to people and this planet would be much better if we get rid of disorders and diseases like this.

I am excited to work with a new group on an exciting and novel approach to finding a cure. This project has come out of the Tyler's Hope Summit and should have implications on all of dystonia as well as some other diseases. It is very aggressive.

Tyler continues to impress us with his school work and knowledge. He has straight As and is taking some advanced courses. He has decided to get botoz in his jaw and see if it will help with his eating. We are also hopeful that it will allow him to close his mouth without pushing on it with his hand.

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May 12th, 2011

by Anonymous on Wednesday, May 11, 2011 10:00 PM
Today was a day for some reflection for me. I spent time with my mother and realized once again some of the things we take for granted like a simple thing as a breeze or a bird singing a song.

I spoke with a friend today that has a very handicapped young girl and he said it has become routine for him. I do not want the things my children deal with (DYstonia) to become routine. As much as we hate it, I want to remember that this is difficult and different so that we keep pushing forward as much as possible. Dystonia doesn't relax and it never goes away. Dystonia's symptoms don't sleep at night.

Tyler is really doing well in Mathematics. He keeps getting 100s on his tests and scores 98 when almost everyone fails. It is remarkable to me how well he does with the disadvantages he deals with. I couldn't do it and I had no excuses. Samantha is in the same boat and I credit most of this to my wife, Michlle, for working so hard with them and stressing the importance of homework.

Samantha has seen some continued improvements when she gets programmed.

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May 10th, 2011- Recap of Ragtime Roast

by Anonymous on Monday, May 09, 2011 10:00 PM
2011 Ragtime Roast

 

I’d like to give a huge thank you to everyone who came out to support Tyler’s Hope Saturday at the first ever Ragtime Roast.

 

The event was a lot of fun and I’m sure everyone was as impressed as I was at the complete transformation of Touchdown Terrace courtesy of Dan Hathcock and Unforgettable Events.  From the bands to the singing waiters to the cigarette girls, the Unforgettable Events team thought of every detail.  I was also impressed with everyone’s costumes.  I saw flapper dresses, zoot suits, hats, tons of feathers, even people who dyed their hair for the event! 

 

I can’t do the spectacular food justice in an email but suffice it to say that Byron and Blue Water Bay served some of the best food I’ve ever had.  O!O Tapas and Tinis provided us with the liquor, wine and bartenders that kept our glasses full all night. Gator’s Dockside donated the beer.

 

Storm Roberts did an excellent job as the emcee of the event while Aaron...