Ua rare genetic disease, theepidermolysis bullosa, which makes the skin extremely fragile: it is the condemnation of the so-called «butterfly children»few cases in the world, including the son of the actor and model Sergio Muniz, who together with his wife Morena Firpo he recounted fears and challenges of life alongside Yari, five years.
Sergio Muniz and Morena Firpo, between pain and strength
Host of the program People – Change your point of viewthe couple focused on the pain that their son’s illness inevitably triggered, but not only that.
«When they tell you that your child has a rare disease The world collapses around you, it’s a shock», the words of Morena Firpo. «You feel displaced, as if everything stopped for a moment». Children like Yari are few. «They told us that There are very few cases like his in the world, just four. It is a particular mutation, as if some cells work and others don’t and the skin becomes something extremely fragile. Luckily his is not as serious as others.” At first, the couple felt their world collapsing around them. “You don’t expect something like this when a child is born,” Muniz said. Then, however, that desperation gave way to something else: «You can’t stand still because you realize that he is there and he needs you».
Sergio Muniz and his wife Morena Firpo talked about their son’s rare disease (IPA).
Life with illness
Sergio Muniz and Morena Firpo are doing everything they can to not burden their son’s illness. For example, they travel whenever they can, something they have always done and which the child also really likes. “We didn’t want to stop living and we don’t want him to,” they declared. They have been to India with Yari and also often go to the seaside: «He likes it a lot, he feels good in the water and it’s good for him», they added. Little Yari, for his part, is very aware. «When some children ask him what he has, what the wounds on his hands are, he calmly replies: “I’m a butterfly child”. He doesn’t say it with weight, he says it like a normal thing. From our son we learned patience, not to take anything for granted and to never stop.”
The search for butterfly children
For butterfly children, especially when the cases are very serious, hope lies in research. In 2024, for example, at the Bambino Gesù Pediatric Hospital in Rome, a selection of patients began to be involved in a study aimed at designing a gene therapy. The cure for young patients suffering from this pathology, in fact, could be a genetically modified skin transplant.