Progessional Diary of Tyler Staab

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.

May 10th, 2010

Mon, 10 May 2010 05:00:00 GMT

Today is a big day at Brentwood school (Luke's school) for Tyler's Hope. The kids will all be doing activities that will help them understand living with dystonia and other handicaps. They will do some things like wearing boxing gloves to draw a picture, take wheelchairs through obstacle courses, and do a balance beam with oversized shoes. Luke is really excited because he feels like good about doing something for Tyler's Hope. Samantha gave him $5 she had for the event.

The Principals awards are going to be given in June. The Tyler Staab Award at Williams is going to be given out again. Samantha has worked really hard to try and win it. It is difficult to give it to Samantha because everyone will think she won it because of her brother. There are some really good kids in the running for the award. They all have great grades and shown enthusiasm and compassion.

In the baseball tournament this weekend, Tyler won two Sportsmanship awards(medals). One of the opposing team coaches wrote a nice letter to all of the parents expressing his interest in Tyler playing and directed everyone to find out more information on this website.Small things have huge impacts sometimes.

Saint Michelle(my wife) has been working hard to help with school events and taking care of the kids while I am in Charlotte with my mother.

May 6th, 2010- Kids involved in event

Thu, 06 May 2010 05:00:00 GMT

I met with a small group of people that represent different foundations in Gainesville Florida this morning for breakfast. The foundations (Tyler's Hope being one of them) have formed a coalition to work with the University of Florida and Shands Hospital to promote and enhance the health care services for children in our community. Our first venture as a group was to work with Tim Goldfarb and others to get a dedicated area of the new ER for Children. This was very successful and we are now talking with them about creating a dedicated ER for just children at Shands. It amazes me to see how well this community sticks together and how involved people are in making our community better. I have never seen a community that does a better job at supporting and enhancing themselves. Tyler's Hope continues to benefit from the way this community has rallied behind our foundation to support our efforts to find a cure. Unfortunately my meeting with the coalition and with the University of Florida foundation later in the morning didn't allow me to participate in a Tyler's Hope event in which my wife and children are very involved.

Michelle, Tyler, Samantha, and Luke went to Brentwood school today and went to each class to explain dystonia and Tyler's Hope. Each of the kids asked questions after they were done. The younger kids asked if they were contagious or if they could get dystonia through touching Tyler and Samantha. They got a great education to kick of an event that will create great awareness, understanding, and donations for the fight for a cure to dystonia. Today was the educational day and next week there will be two days of activities in school that expose all of the kids to the limitations and challenges of having dystonia as well as other disorders that cause disabilities. They will do things during P.E. like taking a wheelchair through obstacles and throw a ball into a basket with their opposite hands. There are Tyler's Hope t-shirts given to each student and other ways to recognize the charity.

Tyler is still having a difficult time putting on weight.

We have made the formal offer for one of the top dystonia researchers to head up the Tyler's Hope Center at The University of Florida. We are anxious to get started on some of the excellent research projects that will briing us closer to a cure.

Monday April 26th 2010

Mon, 26 Apr 2010 05:00:00 GMT

Tyler had his battery replaced on Friday. The surgery did not take long although the day was long between getting him in and letting him go home. The surgery went well but Tyler has some pain in the healing process from them cutting into his muscles and chest. The battery that was relplaced is the one that controls his good side of the body(right) and was in his left pectoral. Tyler's bad arm is on that side and has been pulling upwards lately which puts more stress on the incision area. He continues to be a real trooper though and went back to school today.

Samantha has not seen a lot of benefit from the surgery yet but seems to have a little more stability and is able to sit up and pull herself up more now. She looks very cute with short hair because I can see her face now but he hair continues to grow out.

Every day I worry about Luke and watch to see if his arm shakes when shooting a basketball or if he is abnormally clumsy but I can't tell anything for sure yet. He is very energetic and has now graduated into kindergarten for next school year.

The "Thundering for Tyler's Hope" motorcycle event on Arpil 17th was a great success and raised $1750 but also created a lot of awareness. I had several people call and ask about dystonia and Tyler's Hope that had driven by the event and saw the banners. There were well over 100 bikers and even more attndees of the event. Next years ride will prove to be even bigger as the word gets out.

The Gainesville Jaycees gave Tyler's Hope $8,000 for the work we did at the Gator Nationals Camprounds this year and presented the check to us on Wednesday of last week.

We have four new interns starting on the 29th of April.