Meningitis in your words

Vanessa Vicente's story

Location: Brazil
Categories: Bacterial meningitis
Age: Baby 0-1
Relationship: Brother or Sister
Outcome: Bereavement
After effects: Epilepsy - Seizures (Fits), Learning difficulties, Speech problems, Other, Hydrocephalus

Vanessa Vicente - Meningitis in your words

Vanessa Vincente is running the 2025 London Marathon for Meningitis Research Foundation in memory of her brother Rafa.

Rafa's story

Meningitis is a cause that’s close to my heart. I was two years old when my mother gave birth to my younger brother, Rafael - Rafa - on 16th September 1982. We were all so happy when he arrived.

Just 25 days after his birth, my mother noticed that he cried a lot. It wasn’t the usual crying from colic or hunger - it was something different that she couldn’t quite explain. That’s when he had his first seizure, and she realised something was wrong and he was diagnosed with meningitis.

From that day on, our lives changed forever. Rafa lived for 18 years as a baby, needing 24-hour care. My mother dedicated herself completely to looking after him. For 18 years, we did everything we could to make his life as comfortable as possible, and we loved him with all our hearts.

We had to bathe him, change his clothes, give him physical therapy, and feed him soft or liquid food, as he never learned how to chew. Our relationship with him was always full of love. My older brother and I often had to fend for ourselves, because we understood that Rafa needed our mother more than we did. I remember hiding behind the couch, scared, during the many seizures he had.

Despite everything, I always felt Rafa was grateful for life, even with all his limitations. He loved music. He tried to communicate with us and recognised us by our voices. I remember when I got married and was leaving to live in Japan - when I went to say goodbye to him, he cried a lot. That’s when I truly understood that he knew what was happening.

I married when I was seventeen and moved to Japan with my husband to work and build a better life so that Rafa could receive better care. Watching my mother give everything she had to him gave us strength.

Rafa passed away peacefully at eighteen years old, surrounded by love and affection. I named my daughter after him - it was my way of honouring his memory. He’s always in our hearts and will always be part of our lives.

Running London Marathon for Meningitis Research Foundation

Meningitis has been part of my life since I was two years old, and running a marathon for this incredible cause is an honour. It means so much to run for him through an organisation that fights for this cause and for a cure for the disease that shaped our lives and limited my brother’s.

I started running during the pandemic to ease the anxiety I was feeling. Since then, I’ve fallen in love with running and the good it does for me. My first marathon was in 2023, here in Brazil, in São Paulo, where I qualified for Boston and ran there last year.

London will be my third marathon, and I hope to represent the Meningitis Research Foundation - and my brother Rafael - with love and determination.