What he carries on his face, he has long carried in his heart: a feeling of being different, sometimes of exclusion, sometimes of being the object of contempt. But in this fragility, Christ found him, and found him again in difficult times.
“He comforted me, lifted me up, enlightened me. He taught me, over time, that it’s not visible beauty that makes a person valuable, but the inner light that we receive from Him and that we choose to let shine freely and peacefully,” Nikolas Tirrier tells Aleteia.
He’s studying for his master’s degree in teaching, education, and training (MEEF) in Montpellier, and he has Treacher Collins syndrome.
This syndrome manifests itself differently in different people, but it always affects the skull region: the jaw, palate, ears, mouth... It’s essentially a bone malformation.
“In my case, it's a fairly mild form: I have a partial absence of cheekbones and a complete absence of temples, which means I have to wear hearing aids,” explains the 25-year-old.
From Romania to France, for medical care
When he was born in Botosani, Romania, in 1999, doctors didn't yet know how to name or recognize this rare genetic disorder. At the time, his diagnosis raised many questions for his parents.
His father being of French origin, they finally decided to move to France, where their son could receive better medical care. Nikolas was two and a half years old at the time, and his little brother had just been born. The family settled in Avignon, where Nikolas's father, an Orthodox priest, was accepted into a Romanian diocese.
In France, Nikolas underwent several surgical procedures in sequence: dental corrections, fat grafting to his cheekbones, and, most importantly, surgery on his skull, including one procedure to implant a screw.
“I had between two and three operations under general anesthesia, not counting a few under local anesthesia. I had fairly regular medical follow-ups. Until I was 13 or 14, we spent a lot of time in the hospital—then we went back later, but this time for my father,” he recalls.
A new ordeal befell the family between 2014 and 2015: Nikolas's father became seriously ill. “He had leukemia. He died quickly, at the age of 39.”
This period in the young man's life wasn't easy for his family. He has great admiration for his mother, who was the family’s anchor:
The person who had supported our whole family since we arrived in France, for my medical appointments and then my father's, our education and schooling, both my brother and me, was our mother, who continued to work to provide for the family. She was the pillar of our family. A woman of incredible strength, who managed to hold everything together. Resilience became a necessity: she had no choice. We didn't ask questions, we just had to move forward.
Growing up different
As a teenager, Nikolas was fortunate to be part of a generation that did not have social media as much as today. This meant he was able to avoid online bullying. “I could take a break after school,” he says.
At home, he could also count on the unconditional love of his family and his cousins, his first best friends. “My father's whole family came to live in France. We often had them over to our house and spent holidays together.”
He also drew strength from his faith, particularly through the catechism.
"I was at a private Catholic school, and every Easter vacation, the chaplaincy organized a big pilgrimage to Santiago de Compostela. I also attended catechism classes at the Orthodox monastery in Solan, where I had also formed some bonds. All of this was my oasis, I wasn't in despair. It's important to have Christian places around you where you can recharge your batteries," says Nikolas.
He is delighted to have been surrounded by children as well as adults while growing up. “I had adults around me and priests who helped me grow and get through difficult times. They still help me today.”
Nevertheless, as he himself acknowledges, “everything was going well and badly at the same time; that didn't prevent this paradox from coexisting.”
Finding support in faith
In middle school, he sometimes experienced moments of profound loneliness during recess. He found consolation in reading about the lives of the saints.
"I told myself: this martyr is being eaten by lions, another is tied up and has his head cut off; my situation isn't as bad... That helped me a lot. I also kept in mind what the martyrs said: ‘You can do whatever you want to my body, but it won't affect my soul because it belongs to God.’”
Today, Nikolas can finally say it himself, although he admits that it was a real struggle to come to this conclusion: “My syndrome never really affected my soul.”
“I know that even today, I have psychological scars from that period. It's a whole process to heal from it, to invite God into that healing, and it comes with forgiveness,” he explains.
Today, he lives with the way other people look at him, and encourages them not to make it a taboo. He’s studying to become a school counselor. In the summer, he has been volunteering for almost 10 years as an organizer and facilitator in Orthodox summer camps in France and Switzerland.
On these occasions, he meets parents and their children for the first time. The parents are sometimes surprised by his face and don't know what to say when they see him. The children, on the other hand, spontaneously say things out loud. Nikolas isn’t offended:
The parents are embarrassed and try to silence them, but I tell them, ‘Don't silence them!’ If you tell a child not to talk about it because it might be rude or embarrassing, you risk cutting off their desire to bond with the adult. By silencing them, you first create frustration in the child, who has been unable to engage in a real, authentic dialogue, and then you emotionally handicap them in their behavior in other encounters.
Every life is a gift
The French National Assembly passed an end-of-life law (including the legalization of euthanasia and assisted suicide) on May 27, 2025, and it’s due to be reviewed by the Senate in the fall.
Nikolas wonders whether “we have really done everything we can to be alive, to offer life, and to make life beautiful and worth living for everyone?”
“Have we done everything we can before resorting to this drastic solution? Shouldn't this question be asked at the very end, when we have exhausted all other options and solutions? Have we provided good support for everyone, especially young people?” he asks.
While he believes that every life is a gift, he’s also convinced that if he’s here today, it’s because people believed in him:
And I'm not just talking about my parents. I'm also talking about spiritual figures I've known, friends, and loved ones... Even those who looked at me with kindness but didn't have the courage to come and see me when I was alone. I know that often, especially when you're a teenager or young adult, you tell yourself that if you approach someone who is isolated, you risk becoming isolated yourself. I don't hold any grudges against these people; they’re following a system that exists in our society despite themselves.
This is what motivates Nikolas to be there for young people through various activities with children and teens in camps, middle schools, and high schools. He does this through his studies, but also in the community through his involvement in the Orthodox youth association, Nepsis, where he is vice president.
“All these different spaces and environments create islands of oases where young people can experience a true and authentic encounter with themselves, their neighbors, and Christ, and offer joy, faith, and friendship to those around them,” he explains.
Accepting that I am loved by God and my neighbor
With his soft voice and peaceful words, Nikolas nevertheless admits to having gone through periods of rebellion against God, always accompanied by the same question: “Why did you allow this illness? God, can you really love me?”
“I saw my parents' difficult life, the efforts and sacrifices they made. Unconsciously, I had inflicted a kind of guilt on myself. At some point, this translated into the reality that God doesn't love me,” he recalls.
“It hurts to see that you’re causing your neighbor to suffer, that you’re a burden, but I think it’s also an opportunity that God allows so that your neighbor can be sanctified in all humility. It happens simply and naturally. In this way, together, we draw closer to Christ, who loves us personally in a unique way,” he says.
One day, when he had become insensitive to what was bad and even to what was good in his life, a monk said to him, ”Keep your heart open!" Nikolas was 21 at the time, and that phrase has remained etched in his mind ever since.
Later, he also discovered the answer to his suffering through a phrase that the Lord says to us, reported by the 20th-century Romanian theologian ,recently canonized in Romania, Saint Dumitru the Confessor (Staniloae): “Dare to understand that I love you.”
“The biggest challenge I face right now is finally accepting that I am loved by God and my neighbor. Peace is earned through struggle; it’s not something that comes about magically. I still find myself sinking into despair today,” he admits, adding that he has seen that God offers him forgiveness, peace, and love.
He concludes humbly: “If today I can talk about life, love, and peace, it’s because I’ve understood, or am trying to understand, that Christ loves me too and that with His hand, He leads us on a path of freedom and resurrection, into the very heart of our wounds, with peace, love, and hope.”
