Join Edgard's fight against brainstem glioma
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Hi, my name is Nira, and my husband Edgard is facing his biggest fight in his martial arts career. As a blue belt in Brazilian Jiu Jitsu, he is a natural fighter. He is suffering from symptoms such as double vision, slurred speech, loss of balance, falling down, and limited mobility in his right leg and right arm.
On Tuesday, January 23rd, 2024, Edgard was rushed to the Emergency Room, and we received the news that he has a tumor on his brainstem, called "brainstem glioma". This type of tumor is rapidly growing, and there is no cure. It is currently in its final grade, grade four.
To treat this rare tumor, his first round of treatment consists six weeks of radiation. His second round of treatment will be in the West Coast for Car-T cell therapy, which consists of apheresis line placement, apheresis and line removal. We must travel to the West Coast for this treatment. While cells are manufactured, we will return for a month in Miami. Treatment would mean traveling again to the West Coast for 8 weeks, with 6 CAR-T cell infusions via ommaya after which an MRI would be performed.
I will have to step down from my new job so that I can care for my husband. We expect this journey to be very expensive, between our current bills, and the addition of medication, medical treatments, health insurance copays and deductibles, and many more expenses. Your love, prayers, and financial support are greatly appreciated. Edgard needs everyone to be there for him now more than ever, as his life must slow down, and the journey will be long.
Organizer
Nira Nova
Organizer
Miami, FL