Here are the texts about the kids about their live with TAR. If you want more information it doesn’t matter about what, give me a call. I am Malden Feierabend and I study medecin in Hanover. Since September 1998 I am busy with a study on the clinical picture of the TAR-syndrom. We have already found 17 Kids for the study. I like to give you an answer to all your questions and explain the problems of this syndrome. I preprare you for all the proplems and therapies of this syndrom. And if you like you can get in touch with other families.
All the best
Madlen Feierabend
You can find Madlens adress on the homepage www.kindernetzwerk.de
Link TAR- Syndrom. There you find her and the adress of the american group as well.
In the 22th week of my pragnency we’ve found out that there is something wrong with Renes Arms. We had to checked my amniotic fluid. We found out that Rene and Chantal didn’t have a mental disease. In the 33th week I got pain and I had to go into the hospital. During my 36 th week of pregnancy the docotor had to get the twins, because Renes heartbeats weakened. The Kids were brought into an other hospital, because Rene weight was just 1900gr and Chantals 1840gr. The Doctors found out that Rene had only 20.000 blood platts… He got a blood transfusion. Three weeks later he got his first infection (diarrhoea). They told us that they’ll do everything what they can do. ,,He must have the wish to survive” told us the doc. That was very hard for us. The doctor explained us that Renes has the TAR-Syndrom and that he is for the next two years in danger. We got adresses in Hannover, Hamburg and one of a self-help group. In the group we met an other family and we had a lot of telephone calls with them. The first seven month were really bad.
Rene was in a hospital for many times. He got a lot of transfusions and a thrombo concentrate. In this moment they told us, that Rene can die.After the seven month he could go home and after these seven month everything got better. When he was one year I got the permission from the doctors that I could feat him with milk products and he hadn’t any problems. With 15 month they operated him on his clupfoot. The operation went good. We are happy with the result. Rene has now the same weight like his Sister. He eats everything what he prefers. We are happy and proud that everything went so good.
Renes Family
Sabrina birth was a shock, because we realized that she didn’t look like the other Children. She had short Arms and a cluphand. We, the Parents, had to deal with the new situation each for his own. And we had a question to ask: why it happened to us?
Both of the grandparents had to deal with new situation as well.And both protect Sabrina on his special way. Because of the postion of the grand Parents and that Sabrina was the centre our problems started…
After a fight in the Kindergarten, Sabrina changed the Kindergarten and an other kindergarden took Sabrina, where she was happy in the two years. After the time she went to our primary school. Unfortunatley we got problems with the Teacher and after the 2nd class Sabrina went to a school for handicapped Kids.
Sabrinas deformity with her Arms there are deformities with her legs as well. She had short sinew on her knee. That’s why she had bandy legs. After they correct her sinew on one leg they operated the other one. After the operation Sabrina took a cure.
Because of all these problems my husband and me and my son got sick. Sabrinas brother got with 1 ½ years skin problems –psychical reasons was the release. It’s my opinion. Her brother came twice a week to a friend of mine…so I could visit Sabrina in the hospital after her birth. Later he must come with us to the blood checks and therapies because my Husbands , Parents weren’t able to take care of him, because of Sabrinas situation and my mum had to work.
My Husband got problems with his eye, Sabrina was 3 years old nobody exactly knew why. After two years he was operated on his eye.
Me, the Mother had physicly loss. Sabrina was between 3 and 4 years old when I got a pleurisy and afterwards diarrhoea infection…a bit later a nervous breakdown.
My Doctor told me that would be normal.
That was our life. Then we got many problems with institutions and the integration of physicly handicapped people.
That’s the reason why we want to have our peace….
Sabrinas Family
Katrins story
Before I went to school the Teachers in the Kindergarden exactly knew that ,, This Girl isn’t able to write!” After two weeks at school the Teachers were quiet…I was able to write…
Before I went to school I had to go to a Docotor. He had to check the Kids if they are strong enough to go to school. I had to paint a Picture and to stay on one leg and jump… The Doctor was confused and couldn’t believe it . Maybe I was just too ,,perfect”. In the end she asked my Mother if I’m able to carry my school bag.
My Mum tried to be tolerant and needed a moment, swollowed and said:,,Is that the biggest problem ? I can carry her bag to school every morning.”
Yes, sometimes handicapped People must be very tolerant with non handicapped!
So I went to school. For my classmates I wasn’t new. They were my Friends from the Kindergarden.. I asked for help when I needed it. Help with my coat or shoes. Sometimes I got help by five Kids!
I learnt to ride the bike, to get dressed and with 18 years I made my driving licience.
I have no problems when People are looking at me. The worst thing is: looking at me and when I look back they are scared and stopp staring at me…they don’t ask me. Oh I hate that!
There are many missunerstandings and there are still People who think physicly handicapped People are automaticly stupid. WE have to proof that that is not right. We have to go out and fight for our rights! We can’t be scared and sit in our rooms and wait for the end….
Because we are handicapped that’s no excuse to stay alone, not to go out and be sad for the rest of our life. No way!! I don’t want to operate my Arms again because of the others…I have no problem to talk with People. I have a big mouth and no one has to tell me what I have to do!
Katrin
