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I have my first foot orthosis. They help me keep my feet in the right place.
I have completed the 5th Spinrazy application and I hope it will be my last. Everything went well.
After long 8 months I finally got a vertical stand.
Rare Disease Day is held annually on the last day of February.
Well, that's it. My first intensive hiporehabilitation stay
29.1.2020 I first drove my new vehicle. It is a lightweight wheelchair Panthera micro
On 6.12.2019 I was given the 4th dose of Spinraza. In a good Christmas mood, absolutely calm and without tears. I'm a brave boy.
I started with the 3rd dose of Spinrazy with a smile. And everything went well.
In October 2019 I also started rehabilitation in the ARCADA Ostrava center. Parents do everything they can to improve myself
Today is 11.10.2019 and 2nd dose Spinraza is over. I did it bravely, even without tears. Hopefully the course of the following days will be better than last time, without pain ..
And since then I have become a happy boy. I can go everywhere!
And here it is. 1st dose of Spinraza!
That was the day our whole family collapsed.
