WHO ARE WE AND WHAT WE DO ?
A little before Christmas 2020, publications on social media about a little boy for whom time was very limited because of his fatal disease, were shocking. Joanna and Aline are both mothers with children about the same age as this little boy. They decided to make donations and tensely followed this race against time. Finally, just after Christmas, the dream became reality and Maciek had raised the 2.1 USD necessary for the Zolgensma treatment. This amazing news was shortly followed by the announcement that the transfusion had been completed on 6 January 2021. His mother, Ewelina, was overjoyed.
The relief was shortly lived. After doing some research on the website that organized the crowdfunding, it became apparent that dozens of other parents were in the same situation. Whereas some virtual piggy banks were increasing steadily, and would achieve their objective before it was too late (the weight limit is 13.5 Kg in Poland, and 21 Kg in Germany), others were not budging.
It was in these mixed feelings of hope and despair that Joanna and Aline decided to combine their efforts and create a structure in Switzerland that would bring help to all children like Maciek.
Today, they work together in Switzerland to raise the necessary funds for the treatment of children affected by SMA, and to relieve families who live in a state of agonizing uncertainty. They do this through donation campaigns. By mounting an association, they hope to bring the issue into public awareness.