“My daily life was organized around cystic fibrosis”

What led you to tell your story in a book?

Guy Birenbaum, publisher at Plon, convinced me to retrace my journey, with an angle of attack that resonated with me: how to start a new life after believing that everything was over? In 2020, at the age of 27, I was one of the first cystic fibrosis patients in France to receive a revolutionary triple therapy, Kaftrio. But this rebirth did not happen without clashes. I wanted my testimony to help all those who have benefited from this treatment and who have been confronted with the same existential dizziness: that of having a future.

You were diagnosed with cystic fibrosis at eight months old. When you were growing up, what was your daily life like?

At the time, life expectancy for patients did not exceed ten or fifteen years. My daily life consisted of physiotherapy sessions to preserve my lungs, the thirty or so antibiotics to take and, sometimes, hospitalizations. I learned to tame the illness at the same time as my parents, who tried to give me the happiest childhood possible, in Villepreux, in Yvelines. I remember the days spent playing Playmobil or cultivating our vegetable garden with my father, who had become a night nurse; outings to the Jardin d’Acclimatation with my mother; in the summers, in the open air of Le Croisic (Loire-Atlantique). Their love resisted their guilt for having transmitted a genetic pathology to me. Three years after me, they even gave birth to my sister, Pauline, in perfect health.

At 12 years old, you find yourself a beacon: the singer Grégory Lemarchal who has just won the Star Academy, at 21 years old…

For me, it represented the hope of realizing one’s dreams, provided one gives oneself the means. I practiced gymnastics, and I got even more involved in it, up to thirteen hours a week, competing in competitions. My ambition was to one day participate in the Olympic Games. When I got on the apparatus, I had the illusion of being indestructible. But, the following year, in fourth grade, I was disillusioned when a speaker from “Citizenship Health Week” introduced us to organ donation and clarified that recipients suffering from cystic fibrosis rarely celebrated their 20th birthday. Suddenly, I realized that I would not become an adult. I also had to endure the mockery of some of my comrades who called me “the Muco” or “Trumpe-la-mort”. In 2007, the sudden death of Grégory confirmed this conviction. I clung to the gym like a raft.

You can therefore practice sports with cystic fibrosis. And even at a very high level, since at 23, you are crowned champion of France. How did you feel?

A crazy pride in having triumphed over all the able-bodied. And an indescribable emotion in the face of my mother’s gaze, both radiant and crying. For us, it was more than an athlete’s victory: revenge on fate, an accomplishment. However, as soon as I got off the podium, I was thinking about what to do next. Every second counted to leave a mark.

In addition to gymnastics, you study drama at Cours Florent. Where did this other passion come from?

I had passed a professional baccalaureate in commerce but I was thinking of all the vocations that illness had thwarted since middle school. The doctors advised me against sports studies, which were too tiring, and then the job of chef, which was too stressful. The army had crushed my aspirations for the gendarmerie. Graduated from the Florent course in 2017, I became an actor with the desire to play all the roles that had been refused to me. I sailed from the biopic The incredible story of the Postman Cheval to the squeaky comedy Goodbye idiots.

In 2019, you develop Berger’s disease. It threatens your kidneys and forces you to undergo a series of increasingly unbearable dialysis treatments. However, your respiratory condition no longer makes you eligible for a transplant…

My pulmonologist at Foch Hospital, Dominique Grenet, then suggested that I try everything and test an experimental protocol from the United States, not yet distributed in France: Kaftrio, which attacked the defective cystic fibrosis gene. I accepted without hesitation. Very quickly, the results were encouraging: in one week, I had already recovered 5% of my respiratory capacity. Little by little, my breathing improved. The transplant became possible again.

But, quite quickly, you face what a psychologist describes as Lazarus syndrome, named after the brother of Martha and Mary, resurrected by Jesus. What is it about?

It is a survivor’s syndrome which has been diagnosed in Holocaust survivors or people in remission from cancer. In my case, programmed to die since my birth, I had organized my entire daily life around cystic fibrosis and the care it required. I wasn’t planning anything. And suddenly, I had to say goodbye to the physiotherapist who had been with me since I was 5 years old, get used to my loved ones no longer watching over me, and do without financial aid overnight. In the eyes of the world, I was no longer sick.

But, at 29, I didn’t yet know who to become. I listened to Gilbert Bécaud’s song on repeat: “And now what am I going to do with all this time? What will my life be like? » Guilt gnawed at me: how could I feel so bad when I had just had the chance that others, the missing and the patients not eligible for triple therapy, had missed?

At that moment, you understand what your caregivers, your parents and your sister Pauline have endured…

Realizing that the reaper would no longer necessarily hit me first, but that it could take my loved ones before me, I appreciated the permanent worry that Pauline must have felt and which explained her protective “mom” attitude. Today it’s my turn. When I visit my 91-year-old grandmother, “Mounou” – an exceptional woman with extraordinary humor –, in her interior imbued with my childhood, I am struck by a flash of lucidity about the risk of losing her but also about the love she inspires in me.

An inner transformation ends up taking place. How ?

I got back on track thanks to my passion for sport. Looking for a graphic designer to design the visual line of my coaching business, I met Thierry, the father of a friend, who helped me forge a new identity. While I was itching to make up for lost time, this former little singer at the Wooden Cross invited me to walk in the forest, to chat and to open up to spirituality through texts like The Andean Prophecy, by the American James Redfield. He taught me to be patient, to enjoy the present and to thank heaven for the “miracle” of my recovery. From now on, on Sunday afternoons, I go to the church in my town of Plaisir (Yvelines) for a stopover conducive to constructive choices. Time is on my side.

Today, do you feel invested with a mission in relation to illness?

Before the transplant, I sometimes participated in large rallies against cystic fibrosis called the Virades of Hope. But I preferred to stay away from groups of patients, who reminded me of my fragility. Professionally, I went to castings. Today, what interests me is sharing my experience through writing and directing. I am preparing a feature film linked to my testimony: the story of a sick former circus performer who reinvents himself thanks to a new treatment.

You are going to have a son in June. What would you like to convey to him?

I had given up on having a child. Because of cystic fibrosis which affects male fertility, my partner and I had to resort to in vitro fertilization. I would like to get my son to believe in himself, like my family did for me, which allowed me to move forward against all odds. And above all, even if I believe that I have come back from the shadows for this fatherhood, I want to love him unconditionally, not as a miracle baby, but for what he will be.