Mathy’s Story


Born in 2010, I am the last of a sibling. A big sister and a big brother welcome me with open arms. I grow up and evolve in my family like any other child of my age. Nonsense, bickering and good laughs make our house live.

I start my schooling in September 2013, everything goes well, good friends, an excellent teacher and I even have a lover. I pass successfully in medium section. Here too, I have a wonderful teacher. From September to December, I go to school, everything is normal. During December, I start to stumble for nothing, I make small falls on the sidewalks but not serious. Dad and mom think of a shoe problem, maybe they are too small?

On December 25, 2014, my left arm and my left leg do not work very well. Worried, my mom and dad take me on the morning of the 26th to our doctor who refuses to examine me and sends me directly to the Nantes University Hospital. In the first place, I pass a scanner that will not reveal anything. The possibility of a stroke is mentioned. To confirm the truth, I have an MRI. The doctors summon us and announce the terrible news to mum and dad: a stain appears on the imagery, and it is possible that it is a tumor. Non-specialized, they prefer to transfer me to the University Hospital of Angers, which has a neurology-oncology-pediatrics department. We will “pack our bags” on December 30, 2014.

 After the study of my file, we have a small glimmer of hope, the spot seems to be too regular to be a tumor: it would be edema, three days of corticosteroids must put everything in order. New MRI, and no improvement. On January 6, 2015, I had a biopsy. On January 9th, I come home. On January 16th, after 10 days of waiting, the doctors announce to dad and mom that they have identified the evil, it is about a  malignant tumor, rare, inoperable and without medical treatment. Then begin the care. I find myself in a wheelchair, then the purchase of medical equipment for my comfort of life.

From January 21st to March 6th, I underwent 25 radiotherapy sessions. I then start a targeted therapy. Early May, new MRI, no improvement. I go back to school where I enjoy going until the end of the school year. In mid-July, we stop the targeted therapy and I pass a new MRI that does not provide satisfaction. In mid-August, I start a drug chemotherapy. On August 31, I am hospitalized, because my state of health is deteriorating. I keep smiling until the end. Dad, mom, my sister, and my brother are very brave. I give them the courage to fight for a future without me. I fall asleep on October 9, 2015, after 9 months of fighting.

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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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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