One of the highlights of this year's Annual Connect Conference was 21-year-old Luca Buccella’s moving speech at the closing night dinner on Saturday. Son of Filippo Buccella, the President of Parent Project Italy and a friend of PPMD’s for years, Luca inspired us and made us laugh. Watch his speech and read the transcript below. Thank you for sharing, Luca!
Hello everybody, my name is Luca Buccella, I am twenty-one, and I'm here to tell all the boys with DMD and their parents, that a future is there. And I can say that honestly, because the future that I started planning when I was eight has now become my present. To tell everybody that even the "less fortunate" can have a full life.
In many charity campaigns - at least in Italy, I don't know if it's the same in the United States - we hear the expression "less fortunate than us" referring to disabled people. Well, I feel I'm fortunate, or lucky, in many fields. And then, is there such a thing as fortune? Actually, fortune is useless without a strong will. But with your will, fortune becomes mere clay, that you can reshape and transform with your bare hands, just as you wish.
We must be the first to consider ourselves as the normal people we are: the revolution must start within us. But it's not because of our disability that we must take things for granted: we must earn our chances, nothing's free, we have the same rights and duties of every other human being.
Our bodies are handicapped, not our souls: DMD doesn't determine the people we are, it doesn't make us better or worse than anyone else. But it's a part of ourselves that we must learn to live with. It doesn't represent what we are, but it may be considered as a friend, sometimes annoying, with whom we must learn to coexist despite the fights. It's not a part of ourselves, but it compenetrates us, and, if lived positively, can even make us better people.
Just remember that it's not the disease that makes us better, but the way we face it. We must never think that our disabilty makes us better than others, or even special. We are unique, but that's just like every other human being. We don't want to be seen as pure spirits, light bearers with our soul tempered by years of sacrifices: our disease doesn't determine our future, we have to do it. We can be anything we want to be, if we convince ourselves. And to become the people we want to be, it is essential to start planning our future.
And on this specific aspect, I'd like to address myself particularly to parents. You are the first who must raise your children giving them a certainty that a future does exist, and so it must be planned and considered. Because just like everyone else on planet Earth, since the very beginning you must start to build the foundations on which to construct your future.
I've seen far to many people giving up, thinking there was no future for their kids, that they would never reach a certain age. But I believe that this is something you can say for any individual, because no one has the certainty of what's going to happen tomorrow. Abandoning every hope, convinced that there is no future for DMD patients, would be like stopping to drink and eat, because eventually life is going to end and nothing can change that. Whereas life must be planned, dreams must be pursued, and human relations must be cherished, no matter what. Because otherwise, at the age of twenty, you find yourself with no passions, no interests, no love: and so, you don't have a present.
I owe my parents the fact that I've never felt different: so, as they did, allow your children to take risks, to fail sometimes, to savour life in every aspect good or bad. You'll see the results, and your kids will be grateful. Just remember that first we must realize that we're normal and we can have a full life, than we can show it to the world. You cannot live your life hoping in a miracle, in a prodigious remedy that is going to fix everything.
In this last few years, research has taken a giant leap forward, trials on men has started, showing that maybe a cure is not so far away. But what would happen if you spent your whole life just waiting for a cure that will finally allow you to live what society calls "a normal life", it the treatment doesn't reach you in good time? You would have lost a life just waiting, not living. You must become aware of the fact that you can live a full, happy, satisfactory and meaningful life, that maybe the our disease isn't all bad after all.
We must try and embrace our condition, and then we can start to see upsides. Believe me, they are just as many as the downsides. As my friend Pat Moeschen likes to say "Membership has its privileges". And so, we have reserved parking, we don't have to queue at amusement parks, movie tickets are less expensive. In my country, people think twice before insulting you to your face. And if they do so, we can "wheel" them down! And, in a relationship, a disabled person has the absolute certainty that the person with whom he's involved, really loves him for what he is.
Once we have learned that our disability it's not an obstacle in the pursuit of happiness, if the cure were to arrive, it would still be great. But if this weren't happen, it would not be a problem. Because we had understood that we are, and always be, the makers of our future.
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