Alexandre’s Story 


On March 17th, 2009 we had the unbelievable joy to welcome in our family our baby twins Alexandre Luca and Sophie Michelle.  Probably it was the happiest we’ve ever been in life.

Alexandre walked at 9 months and since the beginning, he had been such a gifted, joyful and lively little boy who spoke perfect Italian and French, the mother languages of his parents.

On February 2016 Alexandre’s vomiting episodes started, and we also noticed that he always feel abnormally tired. At this early stage, we noticed an alarming squint. But despite those episodes, Alexandre kept on being our wonderful little boy. It took five months after doctors have their final medical diagnosis, but it was something that no one would ever think of receiving. We were told, he has Gliomatosis Cerebri. It is hard to believe even while the doctors tried to explain to us what is this sickness at that time.

Despite the poor prognosis, his fight with Gliomatosis Cerebri lasted 32 months. He received four kinds of Chemo-therapies, countless medical check-ups, MRI’s, six weeks of radiotherapy and complicated brain surgery, but he never complained. He was just brave, confident and strong. He went to school and participated in sports activities till the last month. He wanted to be treated like the other children.

He remained passionate about the mythology, history, astronomy for he loved reading. He lived each day happily just as many children do. His great sense of humor never stopped, and his love for us, his family is more than everything. He could not stand to see us upset or worry.

Finally, in his last weeks when he could no longer speak, he usually squeezed our hands to tell us again and again how much he loved us.

On November 4th, 2018 he peacefully left this earth but had left behind a huge legacy of love, courage, and hope. My son and his story in Strasbourg where we live touched many people. And his memory will always live with us for the rest of our lives. We will love him forever.

Permission to post the story was personally permitted by Serena and Eric, Alexandre’s parents.

ENROLL IN THE REGISTRY

The GC Registry aggregates data and tissue samples from patients around the world. Intensive study of these samples and data will help unlock the mysteries of this terrible tumor.

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COMMUNITY

Join the advocacy and become part of the community that was established to support groundbreaking research in finding a cure for Gliomatosis Cerebri. Partners are either family touched by Gliomatosis Cerebri or foundations supporting the same cause. Click below to learn how to join the community.

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