When we learned that Ninon had mitochondrial cytopathy, first came a silence that nothing could fill. The diagnosis was made after months of signs, examinations, and doubts! Because these diseases are rare, complex, silent, visible at times and invisible at others. The time between the first symptom and certainty was a path strewn with worry, fatigue, sleepless nights, and questions about tomorrow.
Then, we discovered AMMi — the Association against Mitochondrial Diseases. Since 1998, it has existed to support families, inform, and bring together researchers, doctors, and patients, so that no one faces the unknown alone.
It was a key moment: to know that there were other people, other similar struggles, other tears, other strengths — and outstretched hands.
Thanks to AMMi, we found moral support, a listening ear, understanding, but also concrete avenues: specialists, reference centers, advances in diagnosis, and testimonials from other families who had, in part, walked the same path.
When Ninon passed away, a part of us collapsed. But sadness did not paralyze us. Her life, though brief, showed what courage is: facing an incurable disease, facing a fatigue that no one sees, yet leaving a trace of tenderness, laughter, and love. What does not cease with death is the fight — for her, for others, so that one day science will be stronger, diagnosis faster, and treatment possible.
Today, we continue. Every action we take — sharing Ninon’s story, participating in AMMi meetings, supporting research, bearing witness to what we experience — is offering energy, a light. AMMi, with the affected families, represents this collective strength that does not give up.
We want her memory to serve: to raise awareness, inform those who do not know, and encourage those who doubt. We want no child, no parent to feel isolated or lost when mitochondria fail, when the body no longer has enough fuel, when days become trials.
To all those who share this path, we extend our hand. To all those still seeking hope, let us look at what can be done — research is progressing, protocols are being refined, communities are mobilizing.
And to Ninon: you remain with us, in every word we speak, in every fight we wage, in every dream we still dare to dream, and they are many!
