I am Ida, and I prefer to introduce myself, just as my exuberant cheerfulness tells me to do. I am mum and dad’s ray of sunshine, always smiling, singing, chatty: 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, hard to extinguish.

I am seven years old and I love animals very much, although I cannot draw or colour them because my little hands do not always respond to commands, but I do not let this discourage me and I continue to take life head-on with a big smile. I am a warrior, in name and in fact: resourceful and full of energy, I try to face every challenge that the syndrome places in my path.

I have fought on many fronts: in hospital rooms after surgery but also in the small, ordinary things that other children learn with ease. Some battles I have successfully won. For example – and now I can shout it out loud – after years of training, thanks to my stubbornness, I can dog-swim even without floaties! Yes, you heard me right. Without floaties! Who knows, maybe one day I will be able to get rid of this annoying nappy.

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