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Posted by: The Sumaira Foundation in Caregiver, NMO, Voices of NMO
My name is Roberto and I am a practicing attorney in Barcelona.
When I think back to my childhood, one of my clearest memories is chasing my older sister, Rafaela, everywhere she went.
Rafaela – an independent woman with strong convictions and, why not say it? A wonderfully rebellious spirit – was always the image that came to mind when I thought of someone unbreakable.
But it wasn’t until the Christmas of 2024 that NMO taught our family just how fragile we can be…
During the holidays, Rafaela began experiencing vision problems, which we initially attributed to long hours of work and eye strain. A few days later, however, her condition worsened, and she started experiencing double vision. Although she had already begun medical tests, doctors initially reassured us that there was nothing to be overly concerned about. But when one specialist suggested the possibility of a tumor pressing on her optic chiasm, I didn’t think twice — I grabbed my car keys and drove Rafaela at full speed, ignoring every speed limit, straight to Vall d’Hebron Hospital.
The doctors, even without a confirmed diagnosis, immediately knew this wasn’t a simple ophthalmological issue. They began urgent medical interventions tailored to her symptoms. After long days of high-dose steroids and five sessions of plasmapheresis, there was still no improvement — but we finally had a diagnosis.
I won’t lie: after researching the possible conditions doctors were considering, NMO didn’t look like the most comforting option. And when they finally confirmed that was indeed the case… I gathered all my strength and asked the medical team, “Will she have a normal, peaceful life?” They answered without hesitation: “Yes — though with more visits to the doctor than Rafaela might have hoped for.”
Weeks after being discharged, we are overjoyed to say that Rafaela has regained her vision, begun her treatment and is on a path toward stability. When we look back on those terrifying weeks — a true nightmare for our family — we often think of the stories of hope and resilience we read through The Sumaira Foundation.
Now, more aware than ever of how fragile we all are, we want to share Rafaela’s journey as a way of giving back — to offer hope to other families facing NMO and to thank the Foundation for the light you bring during the darkest moments.
With gratitude,
Roberto
