It had been a very long time since Leo had gained weight or grown.
His mother, Lidia Osorio, says this after the latest nutrition check-up for the 12-year-old boy from Seville who lives with dystrophic epidermolysis bullosa, known as “butterfly skin”. This time, the scales delivered different news: two kilos more and two centimeters more in recent months. She has no hesitation in calling the results “astonishing”.
The family links it to the improvement in his wounds since Leo began receiving Vyjuvek, a topical gene therapy, last April. Their explanation is simple: with the wounds better controlled, the body can devote more energy to growing. This is the family’s assessment, not a proven effect of the treatment, which is indicated to close wounds, not to gain weight or height.
Leo was already known for having called on the European Parliament to provide access to this treatment. He was, along with Adrián, among the first patients in Spain to receive it when Andalusia decided to fund it. And he continues to ask for the same thing: that no one be left without the therapy because of where they live.
