Girl with 'butterfly skin' dies

Jessica Liliana Ramirez suffers from epidermolysis bullosa, a rare skin disease also known as 'crystal skin' or 'butterfly skin.'

Story highlights

  • Jessica Ramirez Gaviria dies after a lifetime suffering with 'butterfly skin'
  • She was 23 and fought the Colombian government to get better healthcare as a right to life

Read this story and more at en Espanol

Bogota, Colombia (CNN)Jessica Ramirez Gaviria, the sick young woman who fought to force Colombia to protect her right to life, has died.
Ramirez Gaviria suffered from a condition known as 'butterfly skin' and died in a Bogota hospital from health complications caused by the illness.

In November last year, the Inter-American Commission on Human Rights (IACHR) granted her precautionary measures to protect her right to life and health.
    Her mother had argued to the Commission that Ramirez Gaviria had not been receiving the specialized attention that she needed, which was causing her health to deteriorate.
    CNN en Español spoke to Rosalba Gaviria, Jessica Ramirez's mother, who confirmed that her daughter's death occurred after having been admitted to the hospital twice the previous weekend.
    Ramirez Gaviria, suffered from Epidermolysis bullosa, an illness that causes extreme skin fragility. Her mother said she was hospitalized and discharged in the days before her death, but her condition deteriorated and she was readmitted Sunday. She died at 9 a.m. on Monday, February 1.
    "She was doing very badly, there was a complication ... we took her back to the hospital and she never woke up again," her mother said, adding that if the health system had provided the timely attention that she required, her condition would not have worsened.
    On November 4, the IACHR granted precautionary measures to the 23-year-old, which required the Colombian state to "adopt the necessary measures in order to preserve her life through proper medical treatment."
    Her mother said: "They scheduled appointments and gave her creams, but what was lacking was the specialists in her disease. When we received the answer from the IACHR, it was too late."
    She told CNN en Español: "The state should be alert, so other children in Colombia who suffer from this condition won't have to die. Hopefully they will act quickly and adequately so that the children don't deteriorate like my daughter did."
    Ramirez Gaviria's case, which was followed closely in Colombia, led to an outpouring of grief on social media.
    Epidermolysis bullosa causes the skin to blister as if it had been scalded by hot water. Ramirez Gaviria could not stand her clothes against her skin or physical contact. Her skin fell off and it hurt a great deal. On top of that, as she told CNN three months ago, she suffered rejection because of her strange condition.