This weekend is the Garden Party fund raiser in Raleigh held in honor of Samantha. Samantha was excited because she and Michelle were able to fly up for the event. It will be a great girl’s get-a-way.

Michelle and Samantha were concerned with how they were going to get around in North Carolina since Samantha needs a wheelchair most of the time now. They called the airlines and were told they could ship the chair through or even leave it planeside as they took their seats. Things never go as smoothly as people say they will. Their flight took them through Atlanta with a two hour layover. They sent pictures of the two of them making faces and playing around so I was happy they were having fun. They asked the check in d ... Read More »

Samantha has been feeling some pain and complaining of her body jerking and pulling. Her left foot is also turning in more. I spent some time last night trying to flex her ankle and foot but it was harder than usual and she grimaced some in pain. Although we do not talk about it much, I am a little worried of how her symptoms will progress. Will it affect her back? Will it affect her speech and eating like Tyler? What is the next area we will need to deal with?  I just found out that the secret PAL visited the house today and brought Samantha a cool orange and blue bracelet for her first communion. She was suprised and after all of ths time we still don't really know who the PAL is.

I almost feel guilty saying "we" because my kids and others live with the pain physically and have to endure the handicaps t ... Read More »

The in-laws from Miami came into town to see Samantha's first communion. My father-in-law is Jewish so it was big to get him to the church for Samantha. We caught him trying to take the money out of the collection basket until we told him to put money into it. They are good people and always support the kids and us very much.

Samantha did great at her first communion. She looked beautiful in her dress. Samantha has had difficulties walking as she has progessed so she was in a wheelchair throughout the first communion. A friend of hers, Grace, helped push her chair and it was really nice. Samantha's aunt Barb drove down from Atlanta to support her as well. Samantha's godfather spent all day with her and was wonderful to the kids as always. Between getting her godfather back into church and getting my father-in-law into a church, I was looking around for some crazy excitement to start up. If you know either one of these guys you would understand.

I spent about 35 ... Read More »

A local family magazine is doing an article about the Tyler's Hope for a Dystonia Cure Foundation and were taking photos of the kids at a park this afternoon. While taking the photos, a lady named Misty from the Leadership Gainesville class came over to Samantha and asked her if she was Samantha Staab. Misty explained to her that she was familiar with the foundation and with how much love and kindness that Samantha had given Tyler while dealing with his dystonia. She said that Samantha was her hero and she admired her for her courage and strength. I was not there but I am recapping what Michelle told me happened. This was very big because Samantha hardly is recognized for her efforts and strength. That small act of kindness both helped my family and taught Samantha important things. Thank you Misty!

Samantha is having a harder time walking lately. Her difficulties are most likely the natural progression of dystonia. She continues to do well in school and is some kind of grand wiza ... Read More »

Tyler and Samantha having been working with Michelle on the annual walk-a-thon fundraiser for Tyler's Hope that their elementary school is holding on Friday. The students and the teachers have really made this a fun event. Each participant gets a Tyler's Hope for a Dystonia Cure t-shirt. So far both Tyler and Samantha have raised over $800 alone.

Tyler has been busy with school, the Mustangs baseball team, the fundraiser(walk-a-thon), and a science project he is working on.

Samantha has been busy with school, classes for her first communion at church next weekend, and the fundraiser.

Luke has been planning his future and we were able to go hit some golf balls. He has learned to be a good basketball dribbler but I have not taught him anything, he has learned on his own.

After reviewing the recent proposals by the University of Florida marketing students, we have heeded their advice and interviewed more interns for Tyler's ... Read More »

The secret Pal hit again yesterday. Each of the kids got a flameless candle nightlight that projects cool images. Last night was the first night in a long long time that all of our kids were able to sleep upstairs in their rooms. Normally they sleep on the couchs, beanbags, and downstairs bedroom together. Luke has been sleeping with Michelle and I in our bed with us when he allows us to have some room. This was a big step. They were able to do this because Samantha can walk some with her new brace and Tyler has been able to walk more. Some of our worry has always been Tyler's ability to make the bathroom or call for help(can't yell or talk well). Tyler is older and it is not as scary for either of us because we know he will take care of whatever arises at night now.

Tyler has been going to school without using his wheelchair. I am sure that it is difficult for him and he gets tired by the end of the day.

Samantha went to school today and never used her wheelch ... Read More »

Today is going to be different. Normally we celebratemy father's birthday today. He wasn't big on presents so if we were near each other we would play golf, if we were not, he would play golf. My father was not happy about thekids having dystona and stressed about it. I know if he has a say from above that he has it cured.

Tyler was sick yesterday so he didn't go to school. He is feeling better this morning so I ams ure he wil go. Ty does not like to miss school. It is very difficult for him to get caught back up. Tyler's left hand has improved. His fingers stay straight now where before they would curl backwards and show more seperation. He goes to programming every six weeks now instead of four weeks. Sometime during the fifth week his dystonia starts to get worse so it makes it easier to see the programming when he goes to the office on the sixth week. His tube has been itching him. It is time to replace it but noone like to do it so he puts it off.

Samantha ... Read More »

Michelle and I went to Chapel Hill for the Tyler's Hope for s Dystonia Cure wine tasting event. We saw many of our friends and had a good weekend by ourselves. My mother-in-law watched the kids so we could go up this weekend. I cannot stress the importance of good friends when things are tough. Our friends and supporters are very encouraging and it amazes me how supportive they continue to be. The event was a success because we not only raised money for research but we also were able to expose new people and a new community to Dystonia and Tyler's Hope.

Tyler is doing well and several people have commented how he is growing up. Tyler continues to be able to walk more than what he used to be able to and his features make him look like he is getting older. I don't like it but it is also fun to watch him grow. I would like to find the cure while he is still in school.

Samantha is progressing and we are contemplating starting her on Baclofen. Her legs and ankles ar ... Read More »

      I grew up with four older siblings and do not remember fighting with them as much as Tyler, Samantha, and Luke fight now. It is very clear that they love each other and will help each other but I truly understand the phrase "fighting like brothers and sisters" now.

      The foundation is making great progress through mainly the efforts of Anne Soeder in bringing together an international patient driven registry. The researchers and some foundations are behind this effort as well. Emily Goldstein celebrated her 12th birthday recently and has raised a good amount of money for Dystonia research through their Tyler's Hope support group in California. We continue to get checks and other donations in from their group.

     &am ... Read More »