It’s been two years! Two years since Inga started treatment. Two years, when Inga did not even weaken a little, which would be completely normal for SMA patient. Two years for which we could finally observe the progress of Inga’s development, the progress of rehabilitation, but not the progress of the disease.
Two years ago, before starting treatment, we had so many fears, so many nerves, so much stress, organization and documents to prepare. Everything seemed unreal and too difficult, but we didn’t give up. We knew that we had to do everything so that Inga finally stopped weakening. At that time, there was no official treatment for SMA, no money guaranteed treatment. The only chance for us, for Inga, was clinical trial, which only 180 people were qualified worldwide.
Hard to believe that it all worked out !!! It is difficult to count how many people have helped us !!! ❤❤❤ How many accidental conversations turned into the most important about our and Inga’s fate. Thank you all ❤❤❤. We are so grateful that it is difficult to show. ❤❤❤ Without all of you it would not have been possible!!!
Inga has really taken great advantage of these two years. She has grown almost 20cm. Each of her bones grew. In the normal course of the disease, she would lose muscle every day. We’d suspect that she could no longer raise her arms because they would be too heavy. She couldn’t crawl because she couldn’t bear her body. It is possible that she could not sit stably, because the muscles of the spine would also weaken. She would probably have trouble eating and maybe breathing. It’s good that we don’t have to think about it. We are glad that our girl is getting stronger. Of course, we knew that treatment would not heal Inga right away, that everything would take time. However, we had a little hope that it would be faster. Inga and SMA teach us patience and perseverance. Although Inga still does not walk on her own, she has become much more independent. She needs less of our help with most activities. Inga’s progress allows us to look to the future with greater clarity.
Finally, we would like to boast of Inga’s latest achievement we could compare to man’s lunar landing – Inga knows how to climb her wheelchair on her own! It is a huge leap towards independence. First of all, it allows Inga to use the bathroom on her own, because it is much easier to transfer to a toilet from a wheelchair than it would be to climb from the floor. In addition, Inga can now decide whether she prefers to crawl, walk in splints or ride a wheelchair. The feeling of independence and freedom she is now experiencing greatly pleases us, and above all – Inga!