This year, Polish SMA Foundation came up with the idea of the action: “What would you say to yourself after the diagnosis?”. And we often wonder:
What we could say in February 2014, trembling and crying Inga’s mother and what we could say Inga’s father, who was already packing for going abroad…
We would certainly tell them to believe in the science and achievements of medicine. Only one year after diagnosis in the US, the first SMA drug (Spinraza) was approved. A moment later, it was already available in few Western European countries. At the same time, a clinical trial of another drug (Risdiplam) was launched, in which Inga is the participant. Gene therapy (Zologensma) is already available in the USA – its effectiveness has so far been confirmed only in the youngest patients, but subsequent studies are to answer whether it also works with older children. It is a matter of time, we believe, drugs rebuilding dead motor neurons in the spinal cord will be available…
We would also say them that they will never be left alone with the SMA problem. They will always be able to count on the support of family, friends, doctors, physiotherapists and other parents of children with SMA. This sense of community and being together despite daughter’s illness is something wonderful and something that we probably would never experience in other circumstances.
We would finally say that in a few years Inga will still be a smiling, cheerful, full of life girl who not only goes to school normally, has friends, loves playgrounds and travels, but also wins dance competitions and will represent her region in the national finals!
We are still emotional with this last event and we are very happy about her success. Therefore, we attach some photos from trainings and competitions so that you can enjoy with us. May this 5th year since the diagnosis, which has just begun, bring Inga and our whole family as much joy and happiness.
Those who want to support Inga’s physiotherapy and treatment in Milan may visit: https://www.justgiving.com/crowdfunding/milan5