The stories of our children


Hello everyone!

I’m Ida and I prefer to introduce myself, just like my exuberant happy cheerfulness tells me to do. They are the ray of sunshine of mom and dad, always smiling, singing, chatter: in short, a hurricane of positivity. I admit that sometimes I get overwhelmed by so many intense emotions that make me restless and disturb my sleep, but my joy is a living flame, difficult to extinguish.

I am seven years old and I love animals very much, although I can not draw them or color them because my little hands do not always respond to the commands, but I do not let myself be discouraged and I continue to take the life chest with a beautiful smile. I am a warrior, by name and in fact: enterprising and full of energy I try to face every challenge that the syndrome puts me on the path.

I fought on several fronts: in hospital rooms after surgeries but also in the ordinary little things that other children learn with ease. I’ve won some battles successfully. For example – and now I can shout it out loud – after years of training, thanks to my stubbornness, I can swim a dog even without armrests! Yes, you got it right. No armrests! Who knows, maybe one day I’m going to be able to get rid of this annoying diaper.

My hope? A cure, one that could definitively stop the inevitable loss of all the skills that I have acquired with so much commitment. Hey, but I’m not giving up! Can I count on your help?