Two days before Thanksgiving and there is a lot to be thankful for. For me, family is the top thing followed closely by great friends. I miss my father and my mother but I feel very strong because of the love and strength they gave me while I was growing up. You already know about Saint Michelle and my fantastic kids. My friends I cannot be more grateful for with their compassion for Tyler's Hope and how they make our lives fun.

Now for the update on the kids so that people with dystonia can understand the fluctuation of emotions and daily battles that are fought.

Tyler continues to do very well with his studies and last week he earned 1st place again in the science fair in the botany division with over 350 kids competing and 90 in botany. Tyler will go to the regionals to compete. He will be fitted for a brace/splint for his left wrist and arm soon. He is trying everything he can to get some improvements on his left side. He has had a lot of pulling on his left eye and face lately and it is frustrating...

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Tyler's birthday was two days ago. It is a reminder of the urgency needed in raising money to fund the research. One tear older is one year more that we could have cured him and others. Last night he had five boys sleep over for a party. I am typing this at 5:30 am and they are still not in bed. It sounds as if they have a demolition ball upstairs. Tyler's dystonia has shown up in the left side of his face some. I believe it is the newer programmings but his eye involuntarily closes and he grimaces from time to time. We will try and coorect this.

Samantha had a few days there where her foot was turning in more causing her to fall when she has been trying to walk a lot more. She had a good time and got lots of candy on Halloween.

Luke has started praticing his basketball again. He was a ninja, captain america, and a cowboy this week for Halloween. He broke it down on the dance floor for everyone to see at the Halloween party. Luke loves to dance. Luke turns seven years old on December 1st. This day...

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We were able to take all three kids with us this past weekend to Boston and Newport RI. 

As a reminder for those who do not have handicapped children or are newly diagnosed, airports and airplanes are not the easiest things to navigate with Dystonia. As always Saint Michelle called ahead and got some wheelchairs reserved for the airports and that helps. You cannot use the escalators or stairs with wheelchairs. Our layover in Atlanta was 35 minutes and we had to travel between terminals so waiting on the elevators is frustrating. We did make our connecting flight though. Both Tyler and Samantha have adjusted to the posturing that dystonia makes them take so they were able to comfortably fly to our destination. The last trip we were on, sitting still in the seats was an issue because of all of the dystonic movements. Because of the extra luggage, and walker (we left one of the wheelchairs at home) we needed to rent an SUV to carry everyone around. Samantha started with a head cold and came home with what is now bronchitis.

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Tyler's Hope is proud to be a part of the 2011 Gators Give Program.

Pleadge on line and learn more about the 2011 UFCC Campaign at www.ufcc.ufl.edu

The UFCC is the only official charitable giving drive for UF employees. Contributing to the UFCC is voluntary and can be done through cash, check, direct bill, or payroll deduction.

Both Tyler and Samantha were selected for international travel thorugh there schools. Tyler was also selected this week for a leadership program that would focus on Medicine and Science, Politics, and leadership. These programs are held over the summer at Harvard, Columbia, Georgetown, UCLA and Stanford.

Samantha has plans to walk the 5k with her brother Tyler in the Season of Hope race on December 10th, 2011. Samantha successfully completed the Heart walk 5k last weekend and we are all very proud of her accomplishment and will power.

A quick update and a good story.

Tyler's left foot is looser and is causing him to fall when he walks. The docs say it is a good sign to have that foot loosen up but Tyler has to work on building the muscles. He fell down the steps coming down the stairs this morning.

Samantha's foot has truned a little so she will need to try and tweak her settings so that it straightens out some more again. Her and Tyler go to therapy every week with Tyler going to both phyiscal and occupational therapy.

Luke is reading much better now and is adding using three digit numbers. Samantha works him hard asking math questions all of the time.

The good story: I am going to copy it at my office.

Gray/Robinson Attorneys at Law in Orlando sent a letter describing a unique way to raise money for Tyler's Hope.

Our firm supports"Casual Day for a Cause" on each payday friday. Each employee who wishes to participate contributes a minimum of $5 for the opportunity to dress professionally casual. The...

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It has been a hectic week but a very good one by our standards. The kids have been working hard in school. Tyler has all perfect grades and is concerning me over our bet about Harvard. Samantha is doing equally as well in school and Luke tested out as gifted. I must clarify that gifted means at his age that he is creative with his ability to learn not his knowledge. I would never say that boy is not creative so I can understand why he tested very high.

Tyler just called me on the phone with fantastic news. After more than three years of no wieght gain he has put on three ibs since his last visit. This is huge. I couldn't be happier because this has been my largest worry with him. I hope it continues but right now it is a huge step in the right direction. Tyler's face has more dystonia because of his new DBS settings. He is able to pronounce things better than he could before but there are other symptoms presenting on the left side of his face.

Samantha called me yesterday and explained that...

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 The golf tournament weekend was a success. My wife, St. Michelle was awesome and organized the volunteers. It ran very smoothly. Captain Scarborough, John Marti, the doctors, and everyone did a great job and people could feel the passion. Thank you to all of our sponsors and supporters. Our reach and fund raising is strating to pay dividends and we hope to expand it greatly this year. I am excited bout some new projects we have started to fund and what is on the horizon. No new progress with Tyler. He has had some friends over the last week or so. Tyler continues to struggle with his weight gain. Samantha continues to work very hard in PT trying to build her strength in her back and hips for walking. She is doing well but has a ways to go. Luke spent all weekend riding around with th beer girls on their golf carts. He danced and ran hard all weekend. He sold kisses and made thirty dollars on Friday night in about 20 minutes.

Tyler is recovering from his latest Deep Brain Surgery. There seems to be no complications from the surgery. His hair is growing out like crazy already. He is still having a problem with gaining weight and works very hard to get as many calories as possible each day. His weight remains one of our top concerns. His surgery has not shown the benefits he was hoping for yet. It is early and things could change drastically over time but for now he is having a harder time with the left side of his body. He had to turn off one of the electrodes that we know was giving him some benefit. His pronunciation of words seems better although very light and low. We can understand his speach a little more than before this surgery. Tyler starts rehab this week on his left side. He is also taking a Math camp where he is getting a jump start on next years math. He said it isnt that bad, they have some fun and he is learning a lot. I am taking him and a friend camping this weekend and fishing. I look forward to it.

Samantha continues to impress us and her physical therapist with her efforts to stretch and work on walking. She is able to walk from one furniture piece to the next right now and with her determination I am sure she will be walking on her own in the near future.

Luke is in golf/swim camp this week. He got a set of golf clubs and I thought he was going to sleep with them the first night. He has been playing hard and comes home worn out. He likes to hit the ball a long ways more than putting.

Dont forget our biggest fund raiser is August 11th-13th so please contact us if you want to be involved or donate an auction item.

Samantha had been scheduled for another DBS surgery because she was not getting much of any results until about a month ago. Now she is starting to loosen up and get some of the benefits we were hoping for. Tyler on the other hand was becoming more uncomfortable with the left side of his body and the leads that he had in to affect the left sidewere not doing much for him. The doctors have been doing a lot of research and finding good results with a new target area within the brain called the STN that has been effective in giving some benefits to people that were not getting benefits from leads placed in the GPI part of the brain. Tyler decided to take Samanthas date for the surgery so they could put a new lead into the STN and hopefully give him some benefits on the left side of his body.

Tyler is much smarter than us and he really wanted to do this surgery. I was fearful of "going to the well" too many times. I tried to talk his surgeon and Tyler out of doing it but they were very positive about the hope...

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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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