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Butterfly skin charity loses 80 per cent of its income due to the pandemic

Children affected by the genetic disease Epidermollosis bullosa. File photograph.
Children affected by the genetic disease Epidermollosis bullosa. File photograph. / SUR
  • Some 306 families from all over Spain cope with this rare disease thanks to the support provided by Debra, a Marbella-based association

A Costa del Sol based charity has reported a huge 80 per cent drop in its income as a direct result of the coronavirus pandemic.

The Debra Piel de Mariposa association, founded in and operating out of Marbella, offers support to families of patients suffering from Epidermollosis bullosa, a genetic disease that makes the skin, from birth, as fragile as the wings of a butterfly, hence its common name.

During 2020 - and as a result of the pandemic - the association has seen a dramatic 80 per cent drop in its income as its charity shops were forced to close and fundraising events during the year were cancelled.

They have been “very complicated months” but efforts have focused on maintaining the direct care team for families, according to Natividad Romero, a nurse and coordinator of the organisation.

This team is made up of three social workers, two psychologists and five nurses, who support the 306 families.

"We have had to focus on births and end-of-life situations," says Natividad.

The risk of contracting coronavirus is greater for people with butterfly skin. They have open wounds all over their bodies, which is a major source of infection. This has forced many to remain isolated in their homes and has severely limited the association's ability to help them.

“It is difficult to forecast what’s going to happen this year. Let's hope that the vaccine returns a bit of normality that will bring back our economic support,” says the coordinator.

Among the challenges for 2021 is, in addition to the return to normality, the group’s work to raise awareness for the rare disease, for which there is no cure.

Currently, Debra Piel de Mariposa is the only national support organisation for families living with this disease. They have made important advances throughout their history. So much so that, thanks to a coordination system with different hospitals across Spain, they have the ability to offer a rapid response to the detection of a birth with the disease.

"In 24 hours, or a maximum of 48 hours, a direct care team from the association will be at the centre in question to give advice to professionals and to support families," Natividad says.

You can make an online donation to Debra via this link.