In the Name of
Maria Rosaria
A story of life, pain, hope and research.
Lift your hearts!
Dear Readers,
What we are about to tell you is a true story. It is Maria Rosaria’s story, perhaps the story of many of you; it is our story.
Maria Rosaria
Maria Rosaria Maglione was born in Casoria in March 1947, in the old family home. Casoria was also the birthplace of His Eminence Cardinal Luigi Maglione, Vatican Secretary of State during the pontificate of Pius XII and our Maria Rosaria’s great-uncle. The youngest of four children, daughter of Nicola, a magistrate, and Virginia Giordano, a teacher, she grew up in an intellectually stimulating environment and received a rigorous education. After completing her classical studies at Liceo Umberto I in Naples, she enrolled in the Faculty of Arts. She graduated with the highest marks and began a brilliant career as a teacher.
Despite the rigorous education she received, a clear simplicity always shone within her. Her extraordinary sweetness and purity of heart were beautifully joined by deep honesty and a strong sense of honour. Together, these qualities made her a great woman and, above all, a wonderful mother. In 1978, now a woman, she found love and married Massimo de Bellis; Alberto and Federica were born from their marriage. The clock of life moved on, its hands running quickly, and Maria Rosaria, radiant in her simplicity, enjoyed from the front row the wonderful spectacle of life. Sadly, when everything seemed perfect, when there seemed to be nothing more to ask for, something came that would change her life forever.
When everything changes
It was the year 2000 when a cruel fate stabbed her in the back like the vilest of traitors. She began forgetting telephone numbers that had always been familiar to her, constantly losing her house keys and having difficulty driving. In short, Maria Rosaria discovered that she was affected by a degenerative disease of the central nervous system, a frontotemporal syndrome. From that moment, her life would change forever, and so would ours.
At the time I was little more than twenty years old, still a carefree medical student who often got into trouble. Meanwhile, the sudden storm of pain that had struck Maria Rosaria continued, relentlessly, like a river in flood.
Maria Rosaria’s life changes forever. And with it, the life of her family.
Understanding the disease
These diseases, which we will discuss in detail in a dedicated section, are the consequence of premature neuronal death. In practice, it is a real mass loss, slow and gradual. Millions of neurons and their synapses progressively fall silent.
The consequence is easy to understand. We witness a slow and gradual decline in countless brain functions. Over time, these patients can become increasingly dependent, almost like children. As the disease progresses, ordinary daily actions become more and more difficult. Eating, getting dressed and brushing their teeth can become serious challenges. They depend on us, like a child depends on a mother. The real tragedy is that they can become prisoners of a past that is no longer accessible to them, while still carrying within them the desire to act and communicate. Sounds, gestures, tears and expressions then become their special way of communicating. Yet in silence, those childlike eyes can tell you much more than many unnecessary words.
Pain becomes strength
At twenty, therefore, I became the parent of the “little girl” who had given me life on a cold January morning. Added to this was my father’s pain and the terrible suffering of my sister Federica, who was little more than an adolescent at the time. The anguish and fear of what the future would look like were — and remain — thorns in the heart.
We were fortunate to belong to a well-off social class and, even more, to have a father who was a neurosurgeon. The problem is that you are twenty years old and such a profound change wears you down inside. So many sacrifices, millions of “No guys, I can’t go out... I can’t come... we’ll talk later,” while you are twenty and the desire to live and have fun breaks your heart.
In short, a violent tornado of pain turned our lives upside down. I remember as if it were yesterday that, while preparing for my endless university exams, I repeatedly told my dear friend and long-time study partner Giuseppe about a strange pain in the precordial region that worried me at the time.
A dull, stabbing pain that gave no respite, like a dagger lodged in the heart.
The most frightening and extremely rare cardiothoracic conditions were considered, until the truth became clear. That pain was indeed the consequence of a dagger — but an imaginary one: my mother’s illness. By striking my mother, that cruel fate had also struck me, stabbing me in the heart. I can assure you that feeling your heart go mad with pain day after day, hour after hour, minute after minute hurts. But then comes the moment when you must get back up and start fighting. These are the moments when you must arm yourself with Strength, Soul and Courage. Never give up! You must fight for yourself, but above all for those who suffer. You must struggle, you must smile, and you must never turn off the light on what I like to call the bedside lamp of hope.
Crying is useless, just as trying to explain all this through reason will be useless. The exhausting carousel of questions you ask yourself will not solve the problem and you will only risk falling into what I call the “Mega Question Mark Syndrome”. You must listen to your heart. I did.
Transforming pain into strength
You must throw yourself into free fall through the hidden paths of your soul and you will see that, in the silence, the gentle rustle of a magical wind will accompany the beating of your heart. It is the wind of hope, and only then will you understand my words. This sad and dramatic experience gave me the opportunity to understand who was really hiding inside me. I got back up and decided to transform my pain into strength, and that is why I wanted so strongly to believe in the realization of this project.
The birth of the Foundation
Today I can say that I have managed to realize one of my Great Dreams, perhaps the greatest one living in the drawer of my soul.
This Foundation was born from the desire to study and treat diseases that are still partly unknown. It will also work to offer healthcare assistance to everyone, with particular attention to people from less advantaged social backgrounds. Health belongs to EVERYONE: rich, less rich and poor.
The road we have chosen is long and difficult, but these are the wars worth fighting. I believe this is true nobility: fighting and winning for a just cause, for the weakest. Nostalgia for a time that was and the desire to believe once again in great ideals have set hearts ablaze. It does not matter how long this war will last or how many sacrifices it will cost. The desire to give even a simple smile to those who suffer is enough for us. The important thing is never to stop believing in something Great.
Let us not forget them
Today Maria Rosaria, despite everything, fortunately and by the grace of God, can still give us her sweet smile. The disease has progressed, with all its problems, but when she looks at you or hears your voice, that bright little light still shines in her eyes and her sweet smile is gold for our soul.
There are many, too many, patients affected by these diseases, but unfortunately there is still no truly effective therapy. In any case, I am convinced that there will never be a better medicine than the love received from those close to us. A smile, even a simple smile, can do much more. A caress, gentle companionship, or simply sleeping close to them can already mean so much. But what about those who have none of this? Those who are alone? Those living in desperate economic conditions?
And so: LET US NOT FORGET THEM!
Now you will understand why I began this story by shouting Lift your hearts!
Because it is with my heart that I wanted to create this non-profit Foundation.
All this and much more will be the
“MARIA ROSARIA MAGLIONE FOUNDATION” — and so be it!
A project born together
I thank everyone who believed in me: my family, my lifelong friends Riccardo Sersale and Ugo Naddeo. Without all of them I could not have brought this great project to life.
For some time I had kept repeating the same thing: the Foundation!
My desire became their desire and, tasting the flavour of hope, we began to run together. I sincerely thank Nascar Srl for creating this wonderful website.
Thank you, thank you all, thank you infinitely.
In my eyes, full of sparkling tears, there is great happiness, and in my heart the Roar of Honour resounds powerfully!
I leave you with the words Maria Rosaria always said to me when I was little, in moments of difficulty: “STRENGTH, SOUL and COURAGE!”
And so begins Our Long Journey.....
Dedicated to my Mother and to All Those who suffer as she does
Yours in gratitude,
Alberto de Bellis
The President