The story of Jimena

MY AUTOBIOGRAPHY

Today I want to tell my story, and everything I will say is part of those anecdotes, between happy and sad that are part of my life. The disease that accompanies me begins to be noticed in my first year of life, when I began to take my first steps. I liked it a lot and that didn’t seem to be something normal.

I am Jimena Charrutti Dalmao, I was born on August 10, 2003, I live in the town of Young in the department of Río Negro in a small country in South America called Uruguay.

My family is made up of my father, Juan Ignacio Charrutti Gutiérrez, my mother Noella Alejandra Dalmao Cal and my siblings Tomás and Josefina. Without them I could not be who I am today.

My brothers are the best in the world and helped me out of a terrible pit of depression, the disease consumed me for a long period, but thanks to my brothers and their presence by my side my life changed. My grandmother is also my engine, as are my aunts and uncles, my family in general.

I start kindergarten walking, but a few days later they notice that I keep falling, my parents decide to take me to a sanatorium for clinical studies in the Argentine Republic (Puiggari), there they discover that I have a degenerative disease and there are no treatments. The doctor who treated me sent me on a new trip, this time to Montevideo where I managed to go to B.P.S (Pacheco Sanatorium), I was approached by some doctors who for me are from another world because you can see the interest with which they dedicate themselves to discovering and studying my disease, they tell me that it is a mitochondrial disease. When I started elementary school I used weights, walkers and finally a wheelchair. Towards the end of the fourth year of primary school and the beginning of the fifth grade I had to travel to the United States to discover the name of my disease, it is called “Leigh Syndrome”. The disease changed my life completely; I learned that Leigh syndrome is a rare inherited degenerative neurological condition.

It usually starts in babies between the ages of three and twelve…