Progessional Diary of Tyler Staab

September 2nd, 2010

Thu, 02 Sep 2010 05:00:00 GMT

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.

Luke is Luke. He started kindergarten and has now been moved up to a K-1 split which means he will be learning at a 1st grade level. I have no idea how this is going to work out but they seem to think he can handle it. Luke will have his second football practice today. He is very intense and listens to the coach. I have to remind myself to keep quiet. I will wear my helmet and jerseys on the sideline though. He is easily the smallest kid out there but he makes up for it with his speed. Crazy Luke.

Saint Michelle has been running around with the kids in every direction and works hard on their homework with them. She keeps them motivated.

Some pictures of this years golf tournament are posted under the events/pictures tab.

August 23rd, 2010 Post Tournament

Mon, 23 Aug 2010 05:00:00 GMT

The 5^th 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 and have started clinical trials, started the DIPR patient registry, and provided needed answers to biological questions surrounding Dystonia all in this past year.

The overall winner of the tournament was Dystonia research but also Gary Klopper, Dale Kinsell, Eric Pace, and Brandon Moore (Corporate Marketing Solutions) took home the flags.

The biggest hit from this year was “Samantha’s Bling”, a table set up where Samantha sold jewelry. I am very proud of Samantha, Tyler, and Luke for how they encourage others, inspire others, and give back towards Dystonia research.

The dates are set for next year’s tournament and it will be held on August 11^th-13^th, 2011.

Some photos of the event will be placed in the event photos tab on the website in the very near future.

August 8th, 2010

Sun, 08 Aug 2010 05:00:00 GMT

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 to sign up for flag football. He has been wearing his Gator helmet everywhere he can. We will go pick out a mouthpiece and cleats soon. He and Tyler got a mohawk haircut a few weeks ago. They look crazy. I never thought my kids would get a mohawk so I tease them all of the time.

The girls softball world series is being played her and Tyler's Hope is the charity they chose. We have been handing out TYler's Hope fans and giving information on Dystonia to everyone that comes in.

July 29th 2010 Encouraging email

Thu, 29 Jul 2010 05:00:00 GMT

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 I knew her face from somewhere.

You see, my son...the one I was holding last night...has mitochondrial disease, and he is attached to an oxygen tank and cannula for a majority of the day to assist in his breathing and some of the effects of this disease.

I knew I remembered your lovely daughter's face from somewhere, but it didn't completely dawn on me until I looked around at the rest of your family and recognized Tyler...mohawk and all. In fact, my girls were enamored with your sons' mohawks. :) They loved them.

Your family has been on my mind all day, and I have been burdened to write to you. I wanted to let you know that from the "across the tables" smiles and interactions I witnessed, you and your wife are doing an amazing job raising your children. They seem to be very sweet and kind. I also wanted to tell you "thank you" for being such an amazing example to so many of us facing difficult challenges with trying to find treatments and cures so that our children may live to be adults...and healthy adults at that.

My son, Nathan, is 2-1/2 and has been seeing numerous sub-specialists at Shands since he was just a couple of weeks old. After almost a year of testing and searching for the culprit behind the issues he had since birth, he was diagnosed with mitochondrial disease shortly before his first birthday. Mitochondrial Disease is a multi-systemic neurodegenerative disease, for which, like your situation, there is no cure. We have recently been involved in fundraising and awareness activities for our organization (umdf.org), and seeing your influence in our community to raise funds and awareness to find a cure for dystonia is such a huge example for us.

Thanks for your example. And thanks for sharing your journey and your children with us. They are remarkable!

Sincerely,
Amber
www.lifewiththeferrells.blogspot.com

July 28th, 2010 Mohawks

Wed, 28 Jul 2010 05:00:00 GMT

We all got to spend some time this past week with a couple of families that drove down to Florida for the week from New York to have their children receive Deep Brain Stimulation surgery from DR. Kelly Foote and Dr. Michael Okun. These kids have had multiple surgeries and are hoping that the doctors here at UF/Shands are able to help them. Tyler, Samantha, and Luke played with them and their syblings while the night before surgery started and then we all went to be with them as they waited for the surgeries to be over. It waas another great family that we feel close to now and has dealt with tramendous difficulties. I hope and pray that their children get relief and I am determinde to motivate the researchers to find a cure.
Tyler and Luke decided they were getting Mohawks this week. They did get them and I did not recognize them when I got home. I am praying their hair will grow out before the golf tournament in a few weeks. (The Tyler's Hope Golf Tournament is sold out again and the waiting list is growing). There are still ways to be hole sponsors.
Tyler and Samantha have been having more movements than normal. The doctors are trying different settings of their DBS but it does not seem to be effecting them yet. Tyler continues to try and gain weight but it is an uphill battle at this point.
Thank you for all of you support and don't forget to spread the awareness about Dystonia.

July 16th, 2010

Fri, 16 Jul 2010 05:00:00 GMT

The 5th annual Tyler's Hope golf tournament is coming up soon and we are sold out again. I am starting to get excited as I talk with people that are also excited about this year’s event and how to make it special. A number of corporate sponsors have stepped up and we will raise a lot of money to fund research at a critical time.

The kids:

Tyler has been very busy after returning from Cooperstown NY with his baseball team. He started computer camp this week and ends today with a visit to Disney to check out their animation. It is definitely ok to think of yourself as a jock and a geek. Tyler had some pulling in the left side of his face last week. Although it was a new symptom and scary, I believe it was induced by the fatigue from Cooperstown. He seems to be doing much better. We are trying to give him extra shakes and nutrition since he was not able to take shakes in Cooperstown.

Samantha has been having pain and difficulty. She often has trouble getting to sleep at night which makes her symptoms worse. It becomes a vicious cycle and can be painful. The kids have developed a high pain tolerance so when the pain brings them to tears it is heartbreaking. Samantha is very independent and does not ever let people help her. She manages to get around pretty well but really labors at simple tasks because she won’t let us help. She must get that stubbornness from Michelle's side of the family.

Luke is as crazy as ever. He started a golf/swim camp this week and is having a blast.

June 29th, 2010

Tue, 29 Jun 2010 05:00:00 GMT

The secret pal struck again this morning. The Pal left three books for the kids and a note encouraging them to read during the summer.

I have been traveling a lot lately while Saint Michelle provided family duties so I notice subtle differences in symptoms with the kids more. Tyler has been practicing baseball and very excited about the Cooperstown trip we are taking next week. Yes, Michelle, Tyler and Myself will be out of town but if you plan to rob my house at that time I would not advice it. "Guido" will be staying at the house with the kids and there is always our two trained dogs to contend with. Tyler has made some real strides in his ability to be involved and play baseball. Last week at practice his coach was hitting fly balls to him in left field and Tyler was catching them. Several people called and said how cool they thought that experience was and how other kids have grown from this experience. Kyle McGriff and other friends of Tyler’s were giving him high fives and encouragement. Cooperstown is going to be awesome. Tyler has had some bad pulling in his left arm that makes him hold his arm almost straight up into the air. The docs have been trying to program his dbs and take that away and just last week Tyler received Botox injections in many areas like his jaw and arm to try to help. Tyler has been taking extra shakes during the day since he is out of school and really needs to gain weight.

Samantha has been progressing in her symptoms as far as I can tell. She seems more uncomfortable lately than before a few weeks ago. Her back and neck are pulling against each other and make her bend and contort more. She is still always in the wheelchair and unable to walk. The docs are starting to try some more aggressive setting for her dbs so that she may be able to straighten her feet and allow her to walk. She sometimes starts to cry and I know it is because she is frustrated and wants to be able to do more. She doesn’t like talking about what frustrates her. Sammy still impresses the heck out of me with her drive to learn. She reads a lot. As an example of some small things we take for granted but Samantha struggles with happened at the pool yesterday. Samantha wanted water but we didn’t have the wheelchair for her and she cannot stand at the water fountain. A simple task of wanting and getting water was a major ordeal for us. We need to and will find a cure in the relatively near future.

Luke is still Spiderman and got another Spiderman book to read. He has attended one week of summer camp and will be going back for another week next week. He is learning tennis and swimming a lot. Luke is an EXCELLENT swimmer. He is 5 yrs old and tiny but can swim to the bottom of a 12 ft pool and pick up dive sticks, does flips off of the wall, dives, and is learning the different strokes. Next week he starts golf. Giving Luke a weapon(golf club) is not wise but last week his weapon(tennis racket) was confined to a fenced in area. I am just joking, Luke is very sweet and a great kid he is just a race car in the red all of the time.

The annual Tyler’s Hope golf tournament is coming up in August and I am excited about the health care industry support we are receiving this year. Almost everyone I have contacted has become a supporter and is into helping the cause. People can help in ways other than money by placing the logo and link on their websites and doing the same in the signature of their emails. Some of the National industry support we have received this year is from MD Publishing, AllParts Medical, Parts Source, Ditec, A+ Medical, Ce Tech, Shands Healthcare, Imaging Associates, Absolute Imaging, and the InterMed Companies.

June 5th. 2010

Sat, 05 Jun 2010 05:00:00 GMT

I have been spending some time with my Mother who is suffering from Alzheimers. Every day I want to spend more time with my kids and family. My friends and family are so much more important to me since we have started our battle against dystonia. They have been very important and inspiring to us.

Tyler went with a group of friends to the movies. He said he won a special girl some stuffed animals but she beat him in a race game.

Samantha won the Tyler Staab award for 3rd graders. She was completely suprised and very happy. She has shown excellent character and gets straight As. WE are very proud of her.

Luke found some Batman boxers and thinks he is the Big Dog around the house now. He had his last day of school on Friday and is ready for summer.

June 2nd, 2010

Wed, 02 Jun 2010 05:00:00 GMT

We are nearing the end of the school year for the kids. Luke, aka Spiderman gets out this Friday. All three kids seem to being doing very well again and scored very well on their recent FCATs.

Samantha keeps telling me about the annual Tyler Staab award that her school will be giving out this Friday because she is a finalist. Both Samantha and Tyler lose their aides for next year. Tyler's Aid is moving and Samantha's Aid is becoming a teacher. This is scary going into a new year without knowing the Aid. Tyler's Aid is out on vacation the next two weeks so he doesn't have anyone to assist him while preparing for his finals next week.

Tyler went tubing with a couple friends last weekend and had a blast but he worked really hard to stay on the tube because he can only grip with one hand. Any person would have been completely worn out from a day of tubing but he was having so much fun he kept wanting to do more. I find it hard to tell him to stop even though he probably should because he is eating up calories. I don't want him to be able to do what he wants to do but he is still not gaining weight and it doesn't help to burn so many calories with activities like tubing. Of course I could have driven slower but that wasn't an option either.

I received a call today and am meeting with a gentleman tomorrow about having Tyler’s Hope be the charity for the girls World Series softball tournament. This tournament will bring together the champions from eight regions around the United States. They are girls that are 12 and 13 yrs old. It should get a lot of publicity and we will be accepting donations as well as disseminating information about dystonia and our foundation.

May 25th, 2010 - Progress

Tue, 25 May 2010 05:00:00 GMT

I was very encouraged after an excellent Tyler's Hope Summit. The discussions were lively and I have heard from several researchers that they got energized from the meeting and went back with new ideas and enthusiasm about finding treatments and eventually a cure.

Tyler has been doing well this week after a difficult week with his dystonia last week. He went for a programming last Thursday and found that he was turned up to high causing some of the symptoms to be worse. When he was turned off his left arm relaxed some so they turned his programming down and it seems to have improved some. Tyler's left arm constantly pulls upwards now and stays above his head. Tyler is doing well in school again and won the student of the week award. He has his Junior National honor society party coming up and is excited about that. I wish I was the smart growing up. Tyler continues to struggle every day with his weight.

Samantha is also doing well and has made it very obvious o us that she wants to win the Tyler Staab award at school. Michelle said it is probably down to two people and Samantha is one of them. The teacher that started this award is coming up from south florida to give it again this year. Samantha seems to be starting to get some benefits from the DBS surgery. She is definitely more mobile now although not out of her wheelchair or walking yet. It would be hard for the general public to tell how she has benefited yet but it is easy for us to tell in her daily activity.

Luke is Luke and there is nothing new to tell about "Spiderman". He is always willing to do new things and plays hard from 7am until he passes out.