The twins Carla and Noa (6 years old) were born prematurely and spent a few days in the incubator at O’Donnell Maternity (Madrid). Soon, the doctors realized that, beyond that early arrival in the world, something was not right. In twenty days, his parents, Pedro and Verónica, received the diagnosis: epidermólisis bullosa, better known as butterfly skin, a rare, genetic and incurable disease that affects close to 500 people in Spain. Those affected by this ailment have to bandage their body daily to avoid the wounds and blisters that the slightest friction can generate. Everyday activities like walking or eating become quite a challenge.
«From that moment our lives changed completely. Everything that is the illusion of being parents falls a bit, because you realize that your girls have a rare problem, We had to learn to be parents of twins and nurses at the same time. And we have learned by asking other families, talking to specialists, technicians from the NGO Debra … Sometimes we learn by trial and error, and that is hard “, explains to ABC Pedro, the father of these ‘Lionesses without a shield’, as they have been baptized in social networks.
«At 6 years old they are like little teenagers, very aware of what they can and cannot do. They love to play with other children, but they also know who they can approach because they are calmer children. They love to draw, sing, dance … ”, admits this father, who admits that they have also had to give an express course on butterfly skin to the teachers at the school adapted to which Carla and Noa go. «We do not put limits on them, we try to make life as normal as possible. If they get hurt, our motto is that there are some that are worth it»Admits this father.
At home, Pedro and Verónica have a room set up only for the cures their little ones need every day. To remove the bandages that protect your body and put on new dressings, it is best to do it in a bathtub. Social Security covers the basic medical supplies, but Carla and Noa also need medicines and creams that elevate your pharmaceutical bill up to 200 or 300 euros. Verónica had to stop working to take care of her daughters, and Pedro also changed companies to have greater work flexibility.
At the Madrid hospital in La Paz, a reference center for these ailments, treat more than 200 families that come from all over Spain. “Carla and Noa are already in the family,” acknowledges Raúl de Lucas Laguna. head of the Pediatric Dermatology section. «In this disease, the slightest support or friction can cause trauma, but sometimes there is also mucosal involvement, union of the fingers, contractures, feeding problems … An evaluation of these patients requires them to be fully discovered, to also make an early diagnosis of possible tumors, and it is more difficult to do it without a bath, without humidity. Sometimes it takes anesthesiologist support or pain unit. And in addition, families must be trained so that parents learn to make the necessary cures for their children, a task that the nursing team also helps us with. And it is better to do it in a suitable space, with the necessary privacy “, adds this expert. Soon, this task will be much easier thanks to the creation of a new pediatric care unit, promoted by the NGO Debra and the Carrefour Solidarity Foundation.
When the girls were little, Pedro and Verónica say, many ER doctors did not even know how to take their girls. Now, professionals are becoming more and more aware of the disease. However, the relatives regret, «lThe investigation is very stopped». «It is also very important that there be reference centers to be able to carry out a genetic study to help us identify these mutations, ”says De Lucas.
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