Hello, I want to say what I was thinking today, I say today because I am always thinking of my daughter and her sad end due to this disease. One of the problems of this disease is swallowing, they expell the nutrient bolus instead of swallowing it. This situation is very serious because it alters their feeding process, and I was wondering, after watching on TV great geniouses of IT that apply software for games or for serious things either for health or economic issues or topics from other sciences. We can't be passive in view of this situation and before one of the cruelest symptoms of this disease. My thought is based on the association of doctors and informatics professionals pointing to the study and practise of some kind of method so that these patients can feed correctly. Let's ask the world to join this idea, even when it may be ridiculous or foolish; others might come along with a better proposal and I would find it fine, but let's do it, I know there are very intelligent people that can do this, but if we just look at them and we do nothing there is never going to be a solution to this. Others will be in charge of other things, but let's do it.
I was watching my daughter's photo, with her soft skin, her beautiful blond hair. Those who have never suffered with them this disease, cannot imagine nor feel. Her end was with her head all sutured and her face full of bruises, she looked disfigured. How sad for her parents to see that daughter who grew so beautifully. Then GENIUSES OF INFORMATICS, GET TOGETHER WITH SCIENTISTS IN ORDER TO INVENT SOMETHING TO CARE FOR THEIR HEAD BEFORE THE FALLS THEY SUFFER FROM, Family members, let's publish to the world about this disease, let's ask the scientific community, in which I include Informatics, to get together and help these people. Don't let's stay passive. Let's do something, at least, let's have this known by the world, make everybody know about this. LET'S HELP THIS BE KNOWN.
Together with this, we should not forget to demand an important training of all the people involved in this.