About Us
About Us
Introducing our family: we are parents of a child affected by TAR syndrome and radial aplasia.
We are a family of four – Dad (Jorin) is a mechanical engineer, and Mom (Lara) is a project manager for software development. This turned out to be a great combination to deal with a very rare medical condition, so rare in fact that most doctors did not know anything about it.
We have lived in many places and countries (Mexico, the U.S., France), and currently, we live in the southern part of Germany in a lovely little university town.
Our story
Our daughter was born during the COVID-19 Pandemic in 2020; we were working from home and in half-lockdown with our eldest at home. Balancing all this was huge.
Two days after her birth, we were referred to a clinic in Northern Germany (Kinderkrankenhaus Wilhelmstift) specializing in pediatric hand surgery. In our hometown, we were referred to the university’s genetics department to confirm the suspected (TAR) diagnosis. Although her platelet levels were in the normal range from the very first day on – which is obviously rare in a syndrome that includes thrombocytopenia in its name – the diagnosis was confirmed. Still, we kept monitoring her platelets closely for two years.
We then went to do heart checks and abdominal sonographies, which fortunately came back ok. After two weeks, we started treatment for hip dysplasia. Now that the worst problems that can come with TAR were ruled out, our main questions were: Is there surgery available for her condition? Is it possible to “fix” her hands? If yes, when and how can we do it? And how do we find the best surgeon there is for the job?
After a year of researching and reading papers on Radialization, Centralization, Ulnarization (not many papers available), TAR syndrome, and Radial Aplasia, we decided on the method we would go with. I read about all the different treatment types with external fixators (there are many other options out there) and multiple approaches that were tried before, including transferring of the toe joint (Vilkki procedure), conservative methods of treatment such as splinting and physical or ergo therapy, etc. We carried around our folder with printed-out papers to bring to specialists and read conference summaries (like the one from the conference of the European colleagues discussing Ulnarization). I talked to many parents I found via Facebook or searching patient stories on Dr. Standard’s and Dr. Paley’s websites. I tried to find more German families with similar experiences and gain connections through hospitals (the latter with little success).
Today, our daughter lives engaging in activities like playing, jumping, running, and sharing laughter with her sibling and her friends, just like any other child. She is not in pain, and does not need to take any medication.
Special Thanks to
We could not have made this journey without the help and support of our family and all the lovely families we met on our journey, all the mothers who shared their experience, photos, videos and stories with us.
Dr. Paley & Team
For offering a procedure with the best outcome, the least amount of pain and strain on the child and their families. For giving straight answers, having the highest standards and for treating so many kids.
Dr. Shannon
For being an excellent surgeon, part of the Team that treated our daughter. For answering all of our questions and taking the time to make sure we were well prepared for surgery. For being so kind and always having a smile for us.
Our Parents
For being there. For taking care of our son when we were taking care of our daughter. For pointing out the bright side. For always looking what to improve and to make sure we stay positive.
For her ongoing dedication and support and for being there when things were difficult. For being a friend.
Our Doctors in Germany
Our orthopedist(s): For understanding that Ulnarization procedure is necessary for our daughter and supporting us with referrals.
Our former pediatrician: Special thanks for ensuring we stayed calm and helping us get all the medical exams we requested.
Our Physiotherapist
Being creative, tranquil, and supportive, especially in the first months, was incredibly hard. For the great work she did with our daughter. For having met this wonderful person.
For helping us to navigate the Paley European Institute, giving insightful hints and support on how to deal with German health insurance and lawyers.
Our Lawyer
For supporting us on this journey and helping with administrative documentation, legal argumentation and evaluation.
Facebook - Parents
For all the parents that helped us finding answers to our questions, explaining procedures and therapies, showing images and videos of progress and for being contacts you can ask anything.