School refuses to enroll her child: a mother's call for help to finance the education of Kelyan, her seriously ill son

Céline Guillot et son fils Kelyan : “Il a droit d'aller au collège, d'avoir une enfance comme les autres”. Midi Libre – K. H.

Faute d’autres solutions, Céline a inscrit son fils dans un collège alternatif à Codognan. Mais les coûts de scolarité sont énormes pour cette maman solo qui ouvre un financement participatif.

“He started school, everything went well, he is so happy…" On Monday evening, Céline Guillot, who lives in Vauvert, was taking a breather. Her son Kelyan was able to take his first steps in sixth grade at the Terre et Crayons alternative secondary school in Codognan.

Small class sizes, warm welcome, schooling adapted to the child's difficulties and, in Kelyan's case, to his illness which causes a lot of fatigue. But the cost of 600 euros per month is impossible to bear for this single mother, a nurse who had to stop working to take care of her children.

A serious and rare genetic disease

Céline Guillot is the mother of three children, including Mathys, who died at the age of 11 last April from the same rare genetic disease that also affects her younger brother Kelyan: methylmalonic acidemia (MMA). “The body produces too much ammonia with the risk of coma at any time”, explains Céline who, in addition to the fragile health of her children requiring numerous stays at Necker Hospital in Paris, is fighting for them to have their place at school, like everyone else. A space of joy, of friends, of learning, of “normal life” when daily life is punctuated by the disease and the invasive care it requires.

“Mathys had a liver transplant in 2022, he played tennis, went to the leisure center and was in school in Nîmes, at the École de Plein Air (now Marie-Curie), like Kelyan”, recounts the mother who was devastated by grief. “School was her whole life…” When the Samuel-Vincent specialized college (1), adapted to sick or disabled children, did not want to enroll Mathys for the start of the school year in September 2023, even though his mother had moved heaven and earth &ndash alerting elected officials, media, academic inspection… – "my son, in a state of psychological shock after this refusal, had a very violent graft rejection", she says.

Mathys' death last April

Even a letter from Necker hospital, had no weight :“The refusal of the specialized college seems to me to be completely inconsistent with Mathys's academic background and abilities. All of his CM classmates continued at Samuel-Vincent College, why this refusal for Mathys”? […] This looks like discrimination in a child who has a rare and serious genetic disease, the physical and psycho-affective impact of which is severe […] I therefore ask you to urgently review Mathys's file”, wrote pediatrician Anaïs Brassier. Mathys entered the hospital on September 7, 2023 until his death in April 2024.

So when does it come time for cadet Kelyan to enter college, fed by gastrostomy (a tube in the stomach) “he manages his nutrition bag very independently”, the obstacle course begins again”for Céline Guillot. “At the time of Mathys' file, Samuel-Vincent College had already warned me”that I would have to manage for Kelyan”” 

The Gevasco (assessment file for compensation needs in schooling) specified, however, when leaving primary school that   "the only place Kelyan could go would be Samuel-Vincent. It seems that there is no other suitable solution at first sight. Neither in the public nor in the private sector […] given the fatigue imposed by his illness". A document that remained a dead letter…

A participatory kitty

In the absence of a solution, Céline Guillot therefore turned to the alternative college Terre et Crayons.“Going to Vauvert middle school where we live is much too tiring, especially since Kelyan also suffers from dysgraphia because the disease weakens his muscles and distance learning will isolate him. Going to school contributes to the well-being of children”, adds the exhausted mother: “I hoped in the Republic for my children”. Senator Burgoa promised her an appointment with the next Minister of National Education, she is waiting for an appointment with an elected official from the Region.

To cover the tuition fees of 600 euros per month for all her years of middle school, the mother launched a crowdfunding campaign on helloasso via the association she created, “Pour qu'ils grandir”. Fourteen sponsors have already come forward. “I just want Kelyan to have the most normal life possible. He is a happy child despite what he is going through, despite the death of his brother! “, smiles the mother who is considering filing several complaints.

(1) Contacted by Midi Libre, on July 18, on Mathys' case, the principal of the college replied that “the refusal notice is justified and the decisions of the commission are sovereign. By email on September 4, she was satisfied with a laconic “There was no application file for admission filed in the name of Kelyan for this academic year” in response to our request for an interview.