Jacqueline Pérez Lugo is the mother of Ylenia, a seven-year-old girl who suffers from epidermolysis bullosa, better known as “butterfly skin,” a painful disease of which there are three cases in Arona: in El Fraile, Cabo Blanco and Valle San Lorenzo. Quantitatively they are few, but they make a world for those who suffer from it and their environment.
If you want to consider the entire forest of “rare”, minority, or very complex pathologies, you would have to add those with severe autism, attention deficit/hyperactivity disorder (ADHD) grade 3, Williams syndrome – multisystemic neurodevelopmental disorder, rare and of genetic origin – or Cowden syndrome.
All of them are among those suffered by those who are part of Oxalis Canarias Mariposas de Piel, an association founded by five women from the South, among whom are Mahy Concepción, Ángeles Cerezo or Jacqueline Pérez herself, among others. They are not only aimed at those who suffer from epidermolysis bullosa, but rather they propose “a space for workshops and activities in which to integrate girls and boys who suffer from different types of rare diseases.” And which they have not had until now, as the last one explains.
They were born at the end of last August. And, over the last three months, they have been creating a project in which about forty people participate, according to him. “We are all women from the South,” says Jacqueline Pérez, “but we are oriented towards the entire Canary Islands, because we receive cases from Santa Cruz and Las Palmas, of people whose children do not have a place to socialize and who see us on the networks. social. We get together and our children play,” she emphasizes.
Oxalis is present on various social networks, from Facebook to Tik Tok, where this association shares a good part of its activity. Its promoters, however, want to go one step further to have specialists in psychology and speech therapist. “We are also waiting to have a therapist to use the psychomotor room. There are many who have this problem,” he adds.
Among the challenges that arise is to ensure that the Nuestra Señora de La Candelaria University Hospital, in Santa Cruz, becomes a reference center for those affected by “butterfly skin”, like his daughter, and not having, So, I have to travel to Madrid regularly. “Traveling to Tenerife is not the same as going to Madrid every four or six months,” she explains.
