This week was stressful with all of the different functions/events we were working on. Christmas parties, field trips for school, Season of Hope Race, and running the companies.

Michelle drove the kids around and went on two field trips this week with Tyler and Samantha.

The secret Pal struck again this week giving Luke money(learn to count change) and a card.

The kids are all getting very excited for our trip to Argentina. The dogs(Gator and Tebow) will be watching our friend Stephen Griffin while we are gone.

The doctors are looking into try a new lead or new unit to help Samantha. We have a few more things to try before we consider another surgery. Samantha looks and seems very uncomfortable at times. She also is "independent"(stubborn) and gets very frustrated not being able to do things for herself. We found a cool game for her to play where you put a card in a headband on your head and she still likes learning so she does her work books for fun.

Tyler plays his PS3 all the time with his friends but he gets great grades so I cannot say much.

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Tyler is doing ok. He has received straight As in school again and recently won 1st place in his science fair for Botany. He earned the right to move on and compete in regionals now. There were 320 entries and his school has the largest science fair in the county. This award was especially nice because last year he was frustrated when he could not propose his project because Tyler cannot speak. He was very frustrated and vowed to do better this year. I would say 1st place was better. This year he tried to decide what questions were going to be asked of him before the judges asked and had his aid hand the answers he had written down to the judge that asked the question. If it was a new question he would type it on his blackberry then keep the answer in case it was asked by another judge. Tyler still hasn’t put on weight but he keeps growing. I worry about his ability to earn a living with handicaps if something were to happen to me. He is very bright but his limitations are great. I still cannot believe that he...

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The secret pal stuck this past week. They each got five dollars and were very excited.

Last night was a real adventure. Tyler decided to have a sleep over for his upcoming birthday on Election Day. We worked on the bus and got it night ready (fixed running lights and head lights). We piled 9 13 yr old boys and Luke onto the bus and took them to the Corn Maize in Newberry Florida. The corn maize is pretty spooky and there were some rides for Luke to take that were not as scary. We stayed on the corn farms until around 10:30pm then came back to the house where the boys decided to play some game that is similar to hide- and- seek. Since they were all on the golf course hiding, the sprinklers came on and soaked many of them (that was funny). They all went upstairs and did some kind of wrestling base on the noise. Around 2am I went up to find that someone had mased all of the kids with copious amounts of AXE cologne. After settling down for about two minutes they snuck downstairs and raided the pantry for chips...

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Tyler turns thirteen on Novemeber 2nd. It is hard for me to believe. Some things are good because he is not in his wheelchair while some things remain huge concerns. Tyler has not put on a pound of weight in two years. He works dilegently at trying to get enough calories into him but does not seem to be making progress. His grades are great and he amazes me how smart that he is. I am not sure what to do next except support his abilities and fund money for the cure.

Samantha is in simialr shape except the symptoms show up differently. Samantha is in a wheelchair all of the time and her back/neck pull  a lot making her uncomfortable but she speaks and eats fine whichis the difference between her a Tyler for the most part. Samantha started a series of casting of her left foot to try and straighten it and give her some relief.

Luke is the big deal for us right now. I am very worried that he will start having symptoms. Yesterday I told Michelle that I thought I saw his foot turning in when he ran. She...

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We held the first Dystonia International Patient Registry webinar this past week and it went very well. More people have signed up for the registry and are getting the word out about its importance. It was recorded so we should be able to share it in the near future.

The "Season of Hope" Run will be held on December 11th and it will benefit the Tyler's Hope center at UF. There will be a 5k and a 15k run. I will post more information on the calendar soon. The courses have been layed out and measured and it is now on active.com

Luke is alread in a k-1 split working at a first grade level. Luke has been learning to sound words out and has read three books tonight by sounding out all of the words. He really is starting to excel in his learning and it is fun to watch.

Samantha continues to have some difficulties with her dystonia and has not made much progress with her feet. She went to get reprogrammed last week. She is still waiting to start her serial casting but it was delayed due to a change...

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If you haven't heard it or read it from me, Dystonia Sucks! It is easy to see that dystonia sucks when you are facing it or speaking with someone that is dealing with it but don't forget what these people/kids go through when dealing with dystonia.

Tyler again is doing well in school and recently won the principals writing award this semester. We are still looking into his offer to study in Australia but we are not leaning towards doing it right now. Ty is always playing the video game with the soldier(don't know the name of it which shows how much I like video games). I don't like him spending soo much time on this video game but it is hard to say anything to him when he has straight A's. Tyler's leg has been giving him some pain. It pulls up so when he stands still or lays down it goes up like a flamingo's leg. Tyler refused to get botox for his jaw this last time but he is due for programming of his dbs soon.

Samantha is kicking butt in school also. She is now part of the SCME which is...

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The kids have all started back to school. Tyler is in 7th grade, Samantha is in 4th grade, and Luke started kindergarten.

Tyler has his first test tomorrow. He is still doing well in school but will need to spend much more time at homework and learning this year. Tyler's AID has not been showing up and I believe is sickly. This has not helped Tyler and Michelle is working to try and get this issue taken care of. The school recieves money for the Aids and the position has not been properly filled yet. Tyler was invited to study in Australia on some kind of presidential scholarship. It is a great opportunity but poses other risks and obsticales because of the Dystonia. Any easy solution will be to have me go with him.

Samantha has had some emotional issues with all of the pain and dealing with the Dystonia. She sarted seeing a Phsycologist last week and she seems to like it. She is being fitted for an AFO which is a fancy accronim for something that means a brace. The brace will hopefully straighten her foot. She was very excited to walk a short distance last night after having her foot stretched. She was showing off. It really was awesome to see her so excited so my new goal is to get her walking some even if it is short distances. WE hope the brace will help. Samantha's Aid is good.

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The 5th annual Tyler’s Hope golf tournament concluded Saturday. Our goal heading into this weekend was to eclipse the $1 million dollar mark for funds raised during the golf tournaments. I am happy to say that we achieved our goal and seem to continue to make progress and generate more support each year.  Several of the new sponsors are going to help in other ways and have promised to do much more. We will cure Dystonia and it will be because of everyone’s genuine support for Tyler’s Hope and desire to help with this devastating disorder. Companies are also supporting our cause by raising awareness through adding the Tyler’s Hope website to their web pages and also email signatures as proud supporters.

The doctors (Foote, Okun, and Rodriguez) brought everyone up to date with the research and progress we have seen from the projects we have funded already. Once again, all of these dollars go towards research for a cure and none of it goes to Tyler or Samantha. We have discovered some potential drug treatments...

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I am getting excited about the golf tournament kick off in 11 days. We are completely sold out again and have a waiting list. This shows the support and encouragement that people give when they here about dystonia and ours plans to cure it.Tyler has been doing his summer reading and going to movies with his friends. He swims and went to a party last night for a close friend who is moving to Orlando. His left arm pulls upwards and his jaw has been making it very difficult to eat. We started buying Boost shakes to have in between his high calorie ensure shakes.Samantha has had some fun lately because some friends have come over to play with her and yesterday she went to a friends house and swam. They had a good time. She likes giving people funny make overs but it is very difficult for her because she cannot keep her hands steady. Her back is still twisting and pulling and her feet are still turned in. She has an awesome new haircut that looks great and I think it makes her confident. Luke is doing great and decided...

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Please note the new pictures under the event pictures. We will be updating these for each of the events.The following is a letter I received today that I thought I should share. Dear Mr. Staab, You don't know me, but I have spent a good portion of this evening reading the updates on your precious family through the "Tyler's Hope" website and trying to find a way to contact you all and let you know what a huge inspiration you are to so many of us. My family decided to eat at Outback Steakhouse last night here in Gainesville, and upon entering, we were directed to a table in the back. As I walked toward the back of the restaurant with my son, I met eyes with a gorgeous girl who took one look at us and immediately smiled. So many times at first glance, we are not met with smiles...but with awkward furrows and looks of sadness. But this girl, she smiled as soon as she saw us...it was a smile of understanding. A smile of "I know what you are going through. I then noticed that she was in a wheelchair and realized that...

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