We are sharing the testimony of Emma Del-Rey. It powerfully and authentically reflects what people affected by these rare and often invisible diseases experience.
Because behind every diagnosis, there is a story, a face, a daily struggle; unity and visibility are essential.
17 years ago, our family’s life changed dramatically.
At the age of 4, our daughter received a partial diagnosis of mitochondrial disease. She is now 21 years old, and every day reminds us how complex, rare, and still too little known her diseases are.
From the moment of diagnosis, we knew we did not have the means to fight this disease alone. So we chose another path: that of unity, solidarity, and collective action, by joining the AMMi association.
This choice allowed us to transform our helplessness into energy, our isolation into community. This is how we gave full meaning to the word ‘association’: uniting our strengths, sharing our experiences, and supporting research and families.
Because one certainty has guided us from the beginning: the more numerous we are, the stronger we are.
During this global awareness week, we want to remind everyone that every story matters, every voice counts, and it is together that we will advance research.
Share a photo in green to raise awareness and make Mitochondrial diseases known, so that one day the AMMi boat can reach the port of therapy.
IMP Members Group International Mito Patients Association A.M.Mi
