Thomas’ Story

Thomas was diagnosed with GliomatosisCerebri at the age of 9. It was a disease we knew nothing about nor have heard about. But then we were force to understand that such thing as GC exists and it is a very rare and inoperable brain tumor.

This tumor is in the shape of a spider web and it spread across his entire brain. There is no surgery that can remove it and no treatment that can cure it.

It is any parent’s worst nightmare. No parent can ever accept this kind of disease. And if only it was a nightmare, we would have tried to wake up thousand times. But it was not and at those times, we refuse to think about tomorrow we can only think about today. We thought about how to fight for him, how to make him happy, how to show him our love, how to find a cure and where and who to ask for help. Anxiety hangs around whenever we talk to those medical experts and see those data.

As a kid and up until his diagnosis, Thomas was very much an average boy. He liked music and computer games, and ball hockey, and downhill skiing. Thomas loved Lamborghini, his favorite color was blue, and he was a huge AC/DC fan.

But Thomas was also anything but typical. He seemed to care more for others than for himself. He was that kind of kid who stood up to the bully on someone Else’s behalf. So, who would have thought that such a soft-hearted beautiful being is suffering from something rare and deadly.

And in a unique way, Thomas was special from birth to the end of his life. He came into our lives as a gift and we enjoyed our short moments with him. For us, he is so special and no one can take his place from our hearts.

Our moments with him affirmed that life is always a journey. We are not here to stay, we are all passers-by and so we must take each day in the life as a gift. And he showed us exactly that when he waited for February 29 to make his way to his final destination.

A rare boy, with a rare disease, choosing the rarest day on our calendar to make his exit.

That was Thomas Martin and he was my son.

By Robert Martin (Thomas’ Dad)



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.


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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