Esteban Taton suffers from a rare disease, Prader-Willi syndrome, which results in an uncontrollable need to eat. These impulses have already led him to rob, steal, and rummage through trash cans in search of food. His family no longer knows what to do for him to live normally.
“I’m always hungry. I can’t help it.” In his parents’ home in Saint Gauzens, surrounded by the love of Hélène his mother and Hugo his stepfather, Esteban, a tall 20-year-old man, talks about the illness he suffers from.
At birth, he had severe hypotonia, which is defined by a decrease in muscle tone. A doctor makes the diagnosis: Prader-Willi syndrome. A rare disease which has only 2000 cases in France. The family’s life is turned upside down, but the parents manage.
“I was educated until the fourth,” Esteban recalls. Kindergarten in Briatexte, primary in Graulhet, then middle school in Uli’s class in Gaillac. His mother prepares his dish for him at lunch: “a low-calorie meal, because he needs a much lower calorie intake than usual in order not to gain weight”, explains Hélène.
“I dream of living with animals in the countryside”
EThen, until he was 20, Esteban was semi-resident at the Institut Médico-Professionnel Saint-Jean in Albi. Since July, this structure has judged that it was no longer able to receive it. Esteban now spends these days in the family home. “I need air, to see people. I dream of living with animals in the countryside”.
For the parents, the situation becomes untenable. “We lock all the furniture with food. We also have to take care of the rubbish,” says Hélène. “I act like a policeman, so he doesn’t throw himself at the food”, laments Hugo. The latter is currently on sick leave worried: “A solution must be found before I return to work”.
In addition to eating disorders, Estéban also has behavioral disorders. “He can have very violent tantrums. We have sometimes called the firemen and the gendarmes”, laments Hélène. “She always remembers the episode of the theft in her neighbor’s house:” He broke the tile. He only stole food, but he didn’t take the blame.”
“We don’t want to celebrate Christmas”
To prevent violent attacks, Esteban follows a very heavy drug treatment. This family of 5 children lives today without a social life. “It is impossible for us to respond to invitations from friends or to go to restaurants to avoid his uncontrollable food cravings. We do not want to celebrate Christmas”.
In times of need, the parents call for help. “I wrote to Brigitte Macron, to the department, to the prefecture”, says Hugo. This Tuesday at 5:30 p.m. they are received by the department council’s services: “There are no structures adapted to this disease in Tarn. In Gers it is reserved for people from this department”. A puzzle game.
Esteban’s weight requires constant vigilance. It can vary by 8 kilos in a week, depending on whether it benefits from permanent support or not. The risk of morbid obesity hovers constantly: “Without special care, he will die”, whispers his mother.
The arrival of the postman is a moment of happiness
During our interview, Esteban suddenly stands up. It’s the postman. “I collect Panini cards. I love receiving mail. At the moment it’s the only link with the outside”. He opens his mail: three letters with these precious cards.
“During the stays in the establishments, he met other friends with the same symptoms”, says the mother. Stays of one to two weeks, the only respite for the family. These cards allow him to dream, to imagine a better future.
“One day I want a home. In the meantime, I’m trying to pass the time”. Esteban can read and write. This holiday season, don’t hesitate to send him a postcard or Panini card. Regardless of the copy, Esteban has the network to exchange them.