Gratitude. One more time. We think a lot about that. We try to show our gratitude to everyone: family, friends, people we know, strangers, doctors, physiotherapists etc. We think if we thank all time long it would be still not enough. We’re doing our best. We should be grateful to our destiny – we have ourselves, we have family, friends. We have wonderful, smart, assertive and full of passion son Maks. We have pretty, smart, beloved daughter. The only thing we cannot be grateful for is that stinking SMA. It’s beyond our strength.

Sometimes when we are busy with Inga (physiotherapy, travelling to see specialists etc.) we joking say: “Look, Inga, what you have made to us…”. But Inga’s brother defend her saying: “It is not her fault but your genes!”.

This week the biggest SMA conference in Europe took place in Warsaw, Poland. We couldn’t come but everything was available on-line. Many specialists and pharmaceutical companies representatives came and had lectures. It’s good to know that they realize how much SMA community waits for new drug to come.

Inga surprised us last week. By accident she has found a little stool just nearby her potty. She supposed to use him by standing on it (e.g. while brushing teeth). Obviously she is not able so she used it as a supporting frame to STAND UP from potty. We were so surprised and happy at the same time! Well done Inga!