And what came AFTER?

The treatment has been administered, so does that mean I’m a healthy little girl now?

That is what our whole family wishes for more than anything, but unfortunately, that is not the case. Spinal muscular atrophy (SMA) is a disease that CANNOT be cured.

The medication simply prevents further loss of movement and motor neurons. The motor neurons that were on the verge of disconnecting from the muscles are “saved.” Please, take the word “simply” in the previous sentence with a grain of salt. It is amazing what this medication can do inside a person’s body. It essentially replaces the gene I’m missing. That’s incredible, isn’t it?!

Don’t worry, Mum will also publish an article explaining how it is possible that I developed this disease when everyone in the family is healthy.

Now, let’s get to the point.

After the treatment, Mum, Dad, and I spent four whole days in strict isolation. After those four days, we were discharged, but we had to remain close to the hospital.

However, being discharged didn’t mean our isolation was over. Mum was told that I would need to remain in isolation for approximately two months, although not as strict as it had been in the hospital itself. Mum and I couldn’t visit friends or go inside shopping centres, shops, or restaurants, so we had to stay at home or spend time outdoors in nature.

Luckily, Grandpa has an apartment in Prague, so we were able to stay with him.

After we were discharged, Dad had to leave us because he needed to sort out a few things at work. Grandma took his place and was an incredible source of support for Mum throughout this time. However, she wasn’t allowed to come into the hospital.

So, Grandma and I finally got to see each other, and we spent an entire week together in Prague with Mum.

We went for check-ups and blood tests every other day. I was being very closely monitored. Changes in my little body began to appear after the treatment, and the doctors could see them in my blood test results. Some of my levels started to rise, my blood clotting changed, and my platelet count began to drop. These were all expected side effects. Fortunately, the results were still within a range where no intervention was necessary, and the doctors could simply wait for everything to return to normal on its own.

With every visit, my results got better and better.

And thank goodness, my liver function tests were always absolutely perfect!

That week in Prague with Mum and Grandma was wonderful. I really did visit Motol every other day for detailed check-ups and blood tests, but at last, I could spend time outdoors.

I fed the birds 🐦 and went to visit Stromovka Park. 🌲🌳 One day, even my great-grandma came to visit me. 👵 So, we all went out together for some delicious food 🌮, and the grown-ups enjoyed an Aperol spritz 🥂. It was an outdoor terrace surrounded by nature, where there was nobody else around, so I was able to be there, too.

For Mum, it was the first time in a long while that she could enjoy some pleasant, relaxing time.

Most of the time, she spent her days holding me firmly so that the doctors could examine me. I was really scared and cried a lot, so Mum had to hold me still to make sure nothing happened to me. Afterwards, she would cuddle me, rock me, and hold my little hand, day after day.

So, this week was a much-needed break for her, too. 🥰

After a week, Dad took over from Grandma again, and I had a wonderful time with him, too.

I visited the ZOO for the very first time, and I was absolutely thrilled! Because the zoo is so enormous, the visitors were spread out, so most of the time, we had the place almost entirely to ourselves. We weren’t allowed to visit the indoor pavilions, though. Maybe next time! 🙂

After 14 days, we were finally allowed to go home, back to our family and, most importantly, to our beloved Diego! 🏡🦮

E.