NEWS
February 2024
Dear supporters and followers
We have decided to complete the treatment in the USA. Vivian has completed both the main and the extension study. Once again we would like to mention how incredibly grateful we are to all of you for your amazing support over the past years! None of this would have been possible without you.
THANK YOU SO MUCH FOR EVERYTHING!
May 2023
It has been quite a while since my last entry. Meanwhile a lot has been going on. Vivian unfortunatly had complications due to an infection after her scoliosis surgery. As a result, she had to undergo another surgery just before the turn of the year. Unfortunately, this meant that she was unable to get the treatment in Miami which was actually scheduled for March 2023. Fortunately, we were allowed to skip this one and are now traveling to the US in July 2023. We truly hope Vivian will be fit enough for the flight by then. I will be happy to report again in summer of 2023.
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November 2022
In August 2022 Vivian received her 5th dose of the treatment in USA. Unfortunately, I cannot say how she is doing at this time only that they raised her dose somewhat. But Vivian is doing great with the travelling so far.
Now the 6th dosage is due in November 2022 and we will travel to Miami again. At the end of November, Vivian has to undergo a serious surgery here in Switzerland. Her severe scoliosis (deformation of the spine) has to be corrected in a back surgery lasting several hours. This will be a challenging time for all of us and we are very greatful for many good thoughts and wishes for Vivian! Thank you!
May 2022
After quite a while we are glad to give a latest update on our travels. We have been in Miami in April 2022 for about two weeks. This time the trip was much shorter, only around 2.5 weeks. This will be the same as of now. Vivian will be dosed in a 4 months rhythm now. The next dosing will take place in August 2022. As soon as it might be allowed we are happy to inform how she is doing. So far, this is it not the case unfortunately.
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We wish all our dear supporters and followers a very merry Christmas and all the best for 2022!
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In the beginning of September, Vivian received a dose of the study medicine. We are very thankful and glad that we made it to that point. However, in a clinical trial it is common that you are not supposed to inform about how things are going. So unfortunately, it is not possible to write how Vivian is doing with it. We thank you for your understanding. Apart of that, we are doing fine. It didn't quite work out with the apartment we were looking for. Now we have to change every once in a while but that is ok.
In the beginning of August we had the first visit at the Children's Hospital.
Songs for Vivian: Thomas Straumann sang for Vivian in the pouring rain! Thank you so much TomTom for "singing in the rain"!
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Report in the newspaper: St. Galler Tagblatt July 5, 2021
Broadcast on TVO (Tele Ostschweiz) July 4, 2021
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