Like then, February 15, 2016, today is Monday. It’s been 5 years since the worst day in our lives. The day that turned our lives upside down. Every anniversary brings back memories – the doctor announcing the diagnosis, the most difficult phone call of Inga’s dad to her mother, crying and despair…
However, it wasn’t just the worst day of our lives. It was also the beginning of a new life for us and for Inga in particular. The events that took place from that day pass before our eyes… First of all we remember the enormous help that happened to Inga. We are afraid to name everyone who helped, because we could accidentally omit someone. This support and help made us realize how important and priceless it is to respect everyone around us, how important it is to love, forgive, talk, understand, listen, be for another person. Thank you very much, VERY much.
We are also thinking about the day Inga first got into a wheelchair. Until that November day, she was either crawling or carrying her in our arms or using a stroller. On the one hand, the sight of your beloved daughter in a specialized wheelchair is a shocking sight – it makes you realize that your child is disabled and there is no escape from this fact … In retrospect, we know that a wheelchair for Inga is primarily an extension of her body, giving her freedom independence. It also gives a lot of happiness and joy when dancing on it, she wins a national dance competition (https://fb.watch/3G6XfQEHk-/)
On this 5th anniversary, we also think about the happiest day – May 21, 2018. Inga started treatment in Milan. The treatment we started organizing in the evening of the diagnosis. The prospect of a drug that would stop the progression of the disease and give Inga extra strength was perhaps the last spark of hope in this worst day for overnight. After almost 3 years of treatment, we know that the drug stopped the SMA monster, it allows Inga to slowly learn new skills and wait for drugs that strengthen the muscles even more.
The highlight of the last weeks were Inga’s first steps without support. We can only imagine what a person feels when he/she takes his/her first step – we usually do not remember it. Inga, who is almost 7 years old, describes this feeling exactly! It feels like flying. That she can go wherever she wants now. That she is like her friends. That she is just herself. We do not pay her attention to the fact that she still needs to wear orthoses – her leg muscles have been badly damaged by SMA and are unable to support her weight. We have more years of exercise, rehabilitation and fight for a completely independent first step ahead of us.
You can help with treatment and physiotherapy by visiting Inga’s crowdfunding site: https://www.justgiving.com/crowdfunding/milan6