“I was told that my son was going to become a vegetable, today he can run”: this mother recounts her fight against a rare genetic disease
2023-05-28 14:00:00
“OHe told me straight in the eye that my son was going to become a vegetable, that he was never going to be able to walk. It was unthinkable for me. I promised myself to always fight for him, for his life”remember ANDlodie Ouillon.
This Gassinoise, now residing in La Mole, is “l‘happy mom’ of Lilian, 11 years old, andElea, 7 years old. Eyes riveted on her two little ones, the Varoise struggles to take a minute for herself, always interrupted by the various requests of her son, suffering from an extremely rare genetic disease.
“During my pregnancy, I was informed that my child had a bilateral cleft lip and palate. I was assured that after a restorative operation, everything would be fine. Even during my amniocentesis, nothing was detected”she confides, while caressing the forehead of her protege.
His daily life will change only a few days after the birth of Lilian: “We had returned from the maternity ward and he had a cardiopulmonary arrest. It was his father who saved him. We were transferred to Fréjus, then to the Lenval hospital (Nice), where we spent three months. It is then the beginning of the race for medical appointments.
During this hospitalization, the young mother remains constantly at the bedside of her baby. During examinations, specialists discover abnormalities, but the origins of these malformations remain unanswered.
Inform about disability
Lilian is growing up, but still can’t walk or talk. It is eight years later that the verdict falls. A new life then begins and Lilian is sent for five years to a specialized center in Barcelona (Spain), where he undergoes intensive rehabilitation for two weeks. “Thanks to his efforts, he walks like a leader and can even run. I push him never to let go. That’s my motto”is moved the thirty-something.
But this first victory is only the beginning of the fight. “When I had my son, no one told me about the steps to take to put together a file for the Departmental House for People with Disabilities. This is unacceptable. help these different families who find themselves alone in the face of their questions. AT In the future, I would like to become this kind of referent in the gulf.”
Today, ANDLodie has adapted to this particular way of life and juggles between her work and her family life. This maternal fiber has always flowed in her veins: “As a child, I wanted to become a teacher. After a year at the faculty of Aix, I finally redirected myself to a CAP early childhood.” AT Following this diploma, the student joined the animation and youth service of the City of Cogolin, in 2009, before climbing the various levels. Two years ago, she was appointed head of nursery assistants in the municipality and oversees the development of students and staff.
Running as an outlet
Separated from Lilian’s father, ANDlodie has rebuilt her life with Alexandre Giraud, a restaurateur from Saint-Tropez. From their love was born Elea. “I was extremely afraid of getting pregnant again. I wanted to be able to breastfeed and take care of my baby without any complications. Even though she is only 7 years old, she takes wonderful care of her brother. It’s a relief to have him by my side.”
To release the pressure, ANDlodie immerses herself in reading. Always in her spare time, this sportswoman loves running. This burst of endorphin allows him to “completely disconnect from reality”. It is notably thanks to this sport that his association, “I run for Lilian”, was born ten years ago. “My girlfriends are at the origin of this project. We used to go running regularly, then we decided to do the Saint-Tropez Classic with a photo of Lilian on our T-shirts. One evening, I went to eat at one of them and I received the papers during the dessert. I did not expect it. I embarked on this adventure for my son, but also for all the disabled children in the Gulf.”
A life of service to others
Today, his Facebook page has about 7,000 members. About twenty volunteers are mobilized to organize charity events. “This money allows me to finance medical equipment and therapies for Lilian and other children.”
This project, the president of the association will carry it out until her last breath. Overwhelmed by emotion, she remembers her first action. “A mother could not buy the shower equipment for her son. I settled him in secret. When she received, she called me in tears. I was so happy.”
For her future, the Southerner hopes to have more time for her. “I would like to travel and above all resume running and volleyball intensively. I don’t have time to practice anymore.”ANDLodie Ouillon also hopes that Lilian can, one day, become independent. “I will be delighted that when he comes of age, he joins the Club des six, in La Croix-Valmer. I want to see him flourish alongside other people who are having the same issues. I will always be there to cheer him on and congratulate him.”
Separated from Lilian’s father, Élodie has rebuilt her life with Alexandre Giraud, a restaurateur from Saint-Tropez. From their love was born Eléa.Photo DR.