ROMA (ITALPRESS) – Rarementis Ets is born from the experience of two families who have chosen to transform daily difficulties into a shared project, with the aim of improving the quality of life of people with complex neurological disabilities and those who take care of it. To tell about the vision, in the new episode of “Power Talks – The power of communication” interviewed by Jessica Nicolini, are Giulia Fasanella and Vittorio Maio, co-founders and co-presidents of Rarementis, a foundation born from the meeting of two families and the desire to transform a personal experience into a project capable of supporting others.
“Communication has a huge power, especially in the issues we face every day. It can serve to open a light and give a different perspective to these people than the outside world. Many families who live disability as caregiver do not have the strength or ability to tell what they live. Communication becomes a fundamental channel to make others understand what disability means every day,” Maio explains.
The name of the foundation contains the meaning of the project. “Rare Mentis was born from the union of two words: “rare” and “mentis”. There is rarity understood as preciousness and uniqueness, but also that linked to rare genetic diseases that concern our children. And then there is the mind, the neurological dimension from which we started,” says Fasanella. “The foundation was born from the union of two families, mine and that of Vittorio, who have children with complex neurological disabilities.”.
The activity focuses on epileptic development encephalopathy, pharmaco-resistant epilepsy and complex neurological disability. “When epilepsy comes into play, still today accompanied by a strong stigma, we have an exclusion in exclusion. Access to contexts designed for disability also becomes more difficult. Rare Mentis wants to help create competent and prepared environments to welcome these people,” says Fasanella. The project looks to the future, but above all to the present. “To be able to work at the “after us”, we must start in the “during”. We cannot put this problem forward in the years, when a family with a caregiver like ours is tired. We must start first, thinking about contexts, places and relationships that allow our children to have a future.” At the base of the foundation there is the awareness of how difficult it is to deal with everything alone. “There was no specific moment in which we decided to found Rare Mentis. We realized, through our experience, how complicated it was to face daily and administrative difficulties, in relations with school, Asl and institutions. Making our children recognized their rights is very complex,” Maio explains.
The meeting between the two families was a turning point. “We have seen how the union of two families was sufficient to decrypt our forces, both in the ability to intercept information and as psychological support. From there we realized that it was necessary not to close, not to be alone and to make available to others what we learned in our daily experience”. An important part of this experience, however, remains invisible. “An afternoon of sports, a summer center, a workshop or a few hours away from home without parents are normal activities for many families, but they become complex when there are neurological disabilities, epilepsy and complex communication needs. We need specific tools and continuous supervision. Behind every activity there is a huge job and just people who need more support risk staying out,” says Fasanella.
But the problem is manifested above all in the passages between school, therapies and adult services. “The “during” begins immediately. Our children are six years old, but it’s a moment to find themselves at a time when you leave the school world and therapies end. It creates a period in which they are no longer followed by previous services and are not yet large enough to be taken over by a day centre, if there is room,” Maio explains. “Preserving a routine is fundamental, because the steps back can be very fast. It is clear that the “during” should be built. Among the projects of the foundation there are days dedicated to the relief of families, opportunities for meeting and activities for children in protected environments but the most ambitious goal is to build a structure dedicated to “after us”. “We know it’s an ambitious project. We want to start with small steps, but the end is to have a structure that can accommodate our children adequately, who have welfare needs and, in some cases, also important health care. Today they could hardly be welcomed in existing structures,” says Fasanella.
The foundation will be officially presented on 13 October in Rome, at the Ethical Hotel, with a meeting dedicated to its history, vision and first projects. “We do not want it to be simply a presentation, but a time when a story born from the experience of two families begins to become something collective – adds Fasanella. The goal is to collaborate with institutions, third sector and enterprises to change their gaze on disability.”.
– Photo Italpress –
(ITALPRESS).
