No tiene cura”. Las palabras llegaron como un golpe repentino que robó el alma de un solo jalón. Había muchas preguntas sobre una enfermedad que nunca antes había escuchado y que ahora padecía su primera y única bebé, aquella recién nacida con ampollas en los dedos de sus pies y en su boca. Sin las respuestas que necesitaban y aún con el peso de lo desconocido, ambas, una mamá joven y su bebé con algunas vendas, retornaron a casa.
"His skin is delicate, he has two layers, and only with ointments he has to hydrate it," Rocío heard when leaving the hospital.Studies during pregnancy did not detect the distributioned bullos epidermolysis, a genetic disease that is characterized by excessive fragility of the skin and mucous membranes;It is known as butterfly skin.
"He will live up to two years," they sentenced there, in one of the medical rooms.There was no evil in the diagnosis, it was a "rare" case, of those that are only read in medical literature.What there was was ignorance.
Today Belén is seven years old, he is second in primary.In the world the prevalence of the disease is low, it is estimated that the incidence is 15 to 19 babies affected by every million births, according to data from the International Support Organization for patients with EB Bully Epidermolysis (Debra).
Together with his mother, like these perfect teams capable of tracing the most adverse results, they beat painful chapters of evil that is manifested with burns similar to burns, and now they, along with other parents of children with EB, have two more goals to reach.
First: that people know that the disease is not contagious, it is one of the prejudices that do not end up disappearing.Ampoules and wounds only need to be cured to calm pain and mainly to avoid infections that can lead to complications.Those eyes of horror did not help at all, or Bethlehem, or his mother.
"Some children want to play with her in the park and her moms tell them" No, you don't get closer, you're going to spread "and that makes us feel bad, because it's not like that," says Rocío.Second: They seek recognition of the disease, which is divided into three groups (simple EB, EB Juntural, EB Distrific), to obtain the person with disabilities with disabilities.
“Children with EB are going to live with this disease until they are large, so they will not be able to do many things that the other adults do, and that support that is received by the card for us is important, since we have many expenses forThe ointments that must be brought from the United States ".
Belén enjoys a chocolate and a peanut soup at lunch, likes mathematics, painting and climbing the swing, but avoids the slip to not have new blisters due to the friction of the descent.When he talks about his hobbies, his first permanent tooth, of those who look great in relation to the face that still does not end up growing, attracts attention.And Rocío, his mother with 24 years, in addition to being parvularia, speaks as a specialist, pharmaceutical and activist doctor.Both record videos together, they have their page on Facebook and Tiktok.
"They can integrate into society, they can adapt to the issue of schooling perfectly because cognitively have no problem," says Anahí Kampour, in charge of the Bolivia butterfly leather organization.Since 2017, Anahí with Renato Espada, her husband, began a detective task: contact other parents of children with EB.
“We have a six -year -old son with the disease, which led us to create this organization and search the whole country to other patients.We started providing information, and over time the economic support we received to buy creams and ointments that are not in Bolivia was growing, ”explains Anahí.
The fragility of the skin in children with EB, such as the wings of a butterfly, forces to protect the most exposed areas such as elbows, knees or ankles, but wounds and blisters may appear anywhere in the body, even in theinternal eyelids and the pharynx, which difficulties a good diet.
“We have had to live also, as parents, the rejection of institutions, schools that do not want to accept our children because they do not know what the disease is about, they get scared and think that perhaps it can bring problems with other children and parents.Some think it is even abuse ”, and again ignorance hurts among the families of children with EB.
"Our goal is to irrefish more patients, and work with hospitals so that they suspect that a baby can have the disease contact us, and so we can send doctors who have knowledge about how to treat the disease," says Anahí.
For now, the treatment consists in relieving symptoms for a better quality of life of children.That while investigations are conducted to find a cure for butterfly skin.
"I am a brave girl, and when I am a big one I will be veterinary, chef, hairdresser," says smiling Bethlehem with the fortitude of living.
