Ends at: 04 November 2021
It all came as a shock and we still can’t quite believe, that this is really happening to us.
Amelia was born last year in June and already back then the doctors noticed that our daughter suffers from a small anatomical asymmetry, so we consulted and remained under the care of a neurological clinic. Doctors also noticed a slight hypotonia (decreased muscle tone) - so we started physiotherapy immediately.
Everything with our daughter’s development seemed completely fine, she started to sit and crawl like any other child at that age. We were aware, that some of the milestones might come a little later for her, but we kept on working and never gave up. It was not until recently, when we had to change Amelia’s physiotherapist, when we were first told that some of those things can suggest a deeper problem and we were advised to do genetic tests. Losing no time, we found the right place and hurried to book an appointment.
Eight long weeks later we got the test results back confirming that our daughter suffers from SMA - type 2. Our whole world collapsed immediately. Other parents hearing this sentence are at least given more time - they have a chance to try to raise the money for treatment almost since the baby is born. We were deprived of that time, starting the race for her life extremely late - Amelia is already 17 months old and weights 10kg. We really do not have much time.
Please help us save our daughter’s life.