Last week, Inga was in a hospital in Milan. This is one year from the start of the clinical trial of the new drug – Risdiplam. In May 2018, we were entering the unknown with Inga… A new country, a new hospital, a new language. As it turned out, our decision to start treatment in Milan was the best possible we could ever made. Despite all the difficulties and tiredness, the results of the therapy, at least from our perspective, are extremely optimistic. Over the past year, Inga has not lost her strength but has recovered some of her lost skills. She crawls faster, can knee with support, climbs up low stools and chairs. In her splints she can stand several hours in a standing position (it was max. 30-60 minutes a year ago). Earlier, she did not part with her walker – now she can walk in the orthoses holding up furniture or using sticks. In a moment of courage, she can even let go those sticks for a moment. For the first independent step the way is still very, very long … But Inga’s achievements so far are enormous happiness and joy for us.
Examinations in the hospital have been successful. And although the results are secret, the happy faces of Italian doctors and physiotherapists tell us more than it is needed. Therefore, Inga had cardiological, ophthalmic and neurological examination. There was also a lot of work with physiotherapists. There was also a blood test – here Inga was exceptionally brave.
And between tests there was time for a little sweetness in the cafe and having fun at the outdoor playground. In the end for our Inga, as for every other five-year-old, fun and joy are the most important things in life!
Thank you all for your support! Those who would like to support treatment in Italy can visit the following websites: