In 2011 I got my first Vimizim infusion in Mainz. It was a difficult year for me and my family. My dad used up all his vacation time in order to fly to Mainz with me every Friday. He worked very hard. My mom had to stay at home with my four younger siblings. It was always very stressful.

After the study ended, I wanted to stop the ERT, because I did no longer want to be a burden to my family. I saw how exhausting it was for my parents and that hurt me. But it would have been wrong to stop, because terminating the ERT is simply dangerous. If I had stopped, I would have felt worse than before without therapy. I am glad I kept going and since I can have my ERT at home everything is easier for all of us. Travelling was important but extremely exhausting.

Since I get the ERT, I have been feeling so much better so that I even started to
play theatre. The first play was called “Ich spiel nicht mehr mit”. Unfortunately I could not be in it so often, because I still had to go to Mainz. But then I appeared in numerous theatre roles. My favourite one was Mogli. At our horse show I played the leading role, which was much fun. Anna and Maria came to watch it in June and took a lot of pictures. They loved it and I was very proud.

In September, I had a knee surgery because of strong pain when walking. I got a splint and was not allowed to put any weight on that knee, which again meant stress to my family. We live on the second floor and my mom had to carry me and my wheelchair up and down the stairs. My little twin brothers can’t either climb the stairs by themselves. When we go to the store mom has to go up and down quite a lot until we finally are all in the apartment including our food.

I am longing for a bigger apartment without stairs and a room for myself. I am sharing my room with my two little sisters at the moment. My brothers have a room for their own. I love my family but sometimes I wish to be alone and have some time off.

I turned 16 in November – I wish I can leave my fears and worries behind and have a good new year.
Zülfiye A.

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