Published on 19.11.2019
The announcement of the disease
It all started because of my passion, soccer. Since I was seven years old, I played soccer. I remember it very well. It was a weekend at the Ray stadium in Nice, on the sand pitches. My grandfather had taken me to a soccer tournament and my mother had joined us after her work, due to multiple requests from me (I really wanted her to come see me!). I had already realized that when I was going back and forth between defense and attack (because yes, I was a defender), I would run out of steam very quickly and I had a lot of trouble finishing the games. Until one day, when my mother came to see me during my tournament, observed me and realized that I was indeed running out of steam very quickly and told me so at the end of a match. From there, we decided to go see my general practitioner, Dr. Montagne Christine, to see if everything was normal. When I went, as she listened to my heart with her stethoscope, she realized very quickly that I had a slight heart murmur. She advised us to go see a cardiologist quickly to find out what was wrong. Some time later, we went to a pediatric cardiologist, Mr. Benoit, who after a cardiac ultrasound concluded that I was indeed suffering from cardiomyopathy, the muscle of my heart being thicker than normal. When I left the cardiologist's office, my mother was very worried and it was a real shock for my parents, my family and my friends. From that moment on, everything went very fast because we went to Lenval, a pediatric hospital in Nice, to see a neurologist, Mr. Perelman, who worked closely with Dr. Benoit and who, after a blood test and genetic tests, confirmed that my cardiomyopathy was due to a rare and degenerative genetic disease called Friedriech's Ataxia. I was then eleven years old.
How is life on a daily basis?
This is a rather complex question, because contrary to what one might think, I live it quite well, even though I have had periods when I really had dark thoughts. The dark side of my illness is the one that comes out most frequently because, for example, I forbid myself a lot of things because of the many difficulties it involves. For example, it's really silly, but at 21 years old today, and since the discovery of the disease, I forbid myself to have a girlfriend, convinced that I will be more of a "heavyweight", a real burden rather than a real "boyfriend". There are many situations that may seem trivial for able-bodied people but for us, people with reduced mobility, become real battles to be fought, without any assurance of success. All the daily gestures are more complicated and everything must be well calculated so that any maneuver to be carried out is done in the best conditions and without taking any risk that could aggravate our situation... any ordinary task takes more time and energy ... this energy that we lack so much ... and despite the need for autonomy and independence and the efforts to be as independent as possible, we are constantly dependent on our companions ... It seems to me that I have accepted the barriers imposed by my illness despite the various attempts of my family to make me understand that my life does not stop with my illness and that I can live "like everyone else", if only I would try... and above all accept to break down these barriers... Life is really not simple for us but it is so deserving of being lived thanks to the few moments of joy, happiness and sometimes success that it grants us... For me, the hope of recovery is also a great engine in my life ... it is what gives me the courage to continue to move forward and to progress in order to be ready for the big day.... "never give up" is also part of my motto ... and you ... what are your feelings about the disease?!
Why did you decide to take action to raise awareness of your disease and raise funds to advance knowledge about it?
My main reason is, of course, to help research to reach its objective, that of finding "the remedy" that could help us to improve our lives, even cure us! I would like all the people affected by this disease to be cured as soon as possible, so that they can live each moment to the fullest like everyone else, without the slightest daily gesture becoming problematic and without being afraid of the future. I have been thinking for a few years now about what actions I could put in place to try to make this disease known to as many people as possible and to make sure that we can finally forget about our handicap so that we stop looking at ourselves through it and the difficulties it generates, whatever the degree.
It all started in the summer of 2016, when I was a senior at the Lycée du Parc Impérial in Nice, a time when I was not convinced that I would get my baccalauréat. When the results were announced, I was not admitted. After asking for my grades, I was convinced that a mistake had been made and being a very stubborn boy, I sent an e-mail to the rectorat de Nice making a claim. While waiting for an answer to the latter and refusing to consider repeating a year, it was at this very moment that I had the idea of creating my own brand of ready-to-wear clothing by creating a link with my illness. A few weeks later, a reply to my e-mail confirmed that a mistake had indeed been made and that, consequently, I would be granted a make-up grade. In September, I went to the exams and I obtained my baccalaureate. I was then able to continue my studies (still at the Parc Impérial in Nice) to start a BTS NRC (customer relationship negotiation). During my two years of BTS, I worked a lot on this project with the help of a friend and in parallel to my classes. At the end of these two years of studies and after obtaining my BTS, I could concentrate a lot on the realization of my brand of ready-to-wear and I could finalize this project in June 2019 always with the idea to try, in a way or another to make advance the research on this disease.
To discover Antony Feraud's creations, visit his facebook site Freidrich's Ataxia is a neurodegenerative disease with disorders of balance and coordination of voluntary movements.
It all started in the summer of 2016, when I was a senior at the Lycée du Parc Impérial in Nice, a time when I was not convinced that I would get my baccalauréat.