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Sammy Basso: The contagious strength to live despite premature aging syndrome

Silvia Costantini - published on 10/03/16

This young man with an extremely rare disease called Progeria, which causes premature aging, has exceeded all expectations and is full of joy and an infectious love for life.

Sammy Basso is almost 21 years old and is the longest-living of approximately one hundred young people in the world affected by Progeria (also known as Hutchinson-Gilford progeria syndrome – HGPS), a genetic disorder which effectively leads to living like an old man in a child’s body. This means heart trouble, skin and bone problems, and high blood pressure. But for Sammy Basso, this is nothing more than a detail, an insignificant aspect of his life because, as he says, “it only affects the body!”

We met Sammy on a warm summer’s day at his home near Padua. His family’s house also serves as the headquarters of the Sammy Basso Association, which seeks to raise awareness around the world about his disease and raise funds for research. He welcomed us with the enthusiasm typical of someone in his twenties, but especially the true and disarming smile of someone who knows the value of life.

Sammy, what’s your story?

My story is one of a young man who is 20 years old, almost 21. So my story is made up of friends, school, and now university. It’s a normal story, even if I have a rare genetic disease called Progeria, which affects one in every eight million healthy births, and there are only 100 of us in the world.

How is your life different from that of other young people?

My life is different because I can’t do certain things that everyone else does, like sports, for example, and this is a small matter. I always have to use precaution when I do things, so I can’t say: “Ok, I’ll leave in an hour,” without planning everything well.

Is there anything you would change about your life?

No, I wouldn’t change anything. I like my life as it is, because it’s my life. I have my friends, my parents, my family. These are the most important things. Progeria is a small part of my life, because it only affects the body.

I know you love to travel and that you’re just back from a very full trip to the US. How was it?

I can recall so many emotions from this experience. I don’t remember everything, because we did so much. It was a wonderful trip, especially because I did it with my parents and my friend Riccardo. We saw some really beautiful places and we crossed America from east to west, but it was especially beautiful because we had contact with so many people.

We met the Amish, Bikers, and the Navajo. The Navajo chief gave me a Navajo name, “Chaànaàghaiì,” which means “someone who has come from afar and has a long way to go.” When they give you a name, it means that you are part of the tribe. So now I’m Italian and Navajo.

One very funny thing I remember was Roswell, the city of [space] aliens.

What do your family and friends mean to you?

For me, they are the most important thing I have. My family, my parents who raised me: If I am the way I am, if I believe in certain values, I owe it to them. They taught me so many things, especially respect for others and to live together with others, to be honest, and to value the truth. So they are extremely important, and we are a great team. And then my friends are the ones who give a little spice to everything.

Do you ever get mad at them?

We also go there, but always in a very playful way. I have friends who are very different from me, who would seem not to have anything in common with me because have have very different ideas about things: different political views, different ideas about life … we differ on everything but we are friends!

You wear the Franciscan Tau cross around your neck. What does faith mean to you?

Faith, out of everything, is the most important thing I have. It is the most intimate part of who I am. So I could tell you everything about myself, but were I not to say I have faith, it would be as if I had said nothing. For me God is God; he is indescribable. I believe very much in the message of Jesus, as a religious message. But I also think a non-believer can take the message of Jesus and make it his own.

When do you pray?

I pray in the evening before going to bed. But honestly, more than praying I prefer to put it into practice in daily life. I try… I don’t always succeed, but I’m committed.

Is your prayer more petition or thanksgiving?

My prayer, above all else, is one of thanksgiving. With Progeria, I could ask God to make me well. But Progeria is really only a small part of my life. I have so much: living on this earth, with the mountains, the sea, my family, are all things so much greater than an illness.

What plans to you have for the future?

I have many plans for the future. I am studying the natural sciences with an emphasis in biology. My plan is to become a researcher and to contribute actively to the study of Progeria.

In 2005, we established the Sammy Basso Progeria Association, which seeks to increase awareness about Progeria among common people, but also among doctors, because many of them don’t know about it. We are also raising funds for research.

Research has made great strides, both in the US — where I’m being followed — and in Italy. Together with Bologna’s IGM-CNR (Institute for Molecular Genetics—National Research Council) we created an Italian Network for Laminopathies, which is a little bit different way of working. In the past, researchers didn’t exchange information, for fear of stealing ideas from one other. Now we have brought them together to collaborate and find a solution sooner. We have also brought together medical clinicians so that a patient has a team following him. And we have put these two working groups in contact with associations, patients and pharmaceutical companies. It’s a collaboration that is having great results. It’s a model that is being copied abroad, and we are very happy about this.

The salamander is the symbol of your association. Why? What does it represent?

The salamander is linked to my childhood, because it was my first pet. It’s symbol that has many meanings for me: the salamander is amphibious, living in the water and on land. It is also present in medieval legends, where it was portrayed as living in the hearth, that is, in fire. And do it is a symbol of change, of strength everywhere … The salamander lives in all environments. And that is why it represents our association, which aims never to stop. It’s one of my big future projects: to continue to make it improve more and more.

Sammy Basso’s rules for a happy life?

There’s no secret to being happy because everyone finds happiness where he wants to. We are different and so there’s not just one recipe. But certainly it consists in knowing how to appreciate what you have. I think there are many more things that we all have, compared to what we lack. Then, making plans, wanting to do something, to get involved. Because this is a more active way of living life and of living it fully, and when you see your projects succeed, you feel happy. And then, of course, surrounding oneself with people you like to be around, with people you love.

We conclude the interview with a saying Sammy coined, and which represents his model for life: “Every opportunity we have to be happy should be welcomed with all the enthusiasm we have.”

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