The story of: Léana, Raphaël’s mother

Neurofibromatosis arrived in our lives as if by offence, unaware of it and unannounced…

Our son Raphaël had a rather rocky arrival on Earth. A very difficult delivery, followed by a diagnosis of a coarctation of the aorta of the heart after 48 hours of life. He underwent heart surgery at 7 days. Little did we know at the time that this small heart defect was, in fact, linked to a genetic condition. A spontaneous mutation. It was around six months old that the neurofibromatosis manifested itself after seeing several brown spots dotting his little body.

Looking back today, I’d say that neurofibromatosis happened—but we were not deterred by it. Despite the difficulties and the many medical follow-ups, I wouldn’t change a thing. Raphaël teaches us so much through his resilience, his always positive outlook and his immense empathy. I wouldn’t change a thing.

– Léana, Raphaël’s mother