Living with butterfly skin disease

Nieves Montero was appointed president of DEBRA's national headquarters based in Marbella 30 years ago. She founded the association when she gave birth to her son Iñigo. "He was born with no skin on parts of his body and nobody knew what had happened. He was in intensive care for a few months," she explained.

Thanks to the organisation she created, 350 families are being cared for in Spain. Last month, DEBRA organised an awareness campaign for butterfly skin disease. They are calling for help to fund at least one nurse, however in reality they need two.

Íñigo Ibarrondo, the son of Nieves, said that living with this disease adds "a lot of logistical needs, like eating and care. It takes away a lot of your independence." For example, he can only go to the beach on the days he has a nurse. He needed plastic surgery to be able to hold a steering wheel. He has had to integrate all these disadvantages into his daily life.

Despite this, Iñigo lives independently in Madrid. His daily medical care he goes through "is very much dependent on the professional who performs it." This is a very important issue for people with the disease, as in some cases the treatment can last up to five hours. In Iñigo's case, the disease also affects the inside of his mouth and the lining of his stomach, meaning he needs a gastric catheter. His mother explained how "he has learned to suppress the pain in the back of his mind".

Micaela Magali, 22, is the only person in Marbella who suffers from the disease. She was born in Argentina and has been living in Marbella for four years now. "It is quite hard," she said. "It is very painful, but that is the way it is." She is fighting to increase her disability classification grade, which is currently at 47%, which is too low for her dystrophic level. Since birth, her mother has had to take on the role of cleaning her fingers, "so that I do not close my fists," she said, full of emotion because she cannot escape this part of her life.

Micaela is brave and she works from home remotely for four hours a day. "My body does not work anymore." At least at home she can be helped and guided. And she does not complain: She calls it "living", even though she has to live with precaution. And unimaginable, constant pain. The truth is she has butterfly skin disease, and its wings are real.

DEBRA has won some very important legal battles. In 2015, it obliged the government to provide health care equipment and other funding and aid across all regions in Spain to families who suffer the disease. The charity now has 49 dedicated professionals, but this is not enough. The group has been "treating for thirty years," but its battle is never-ending. All they have is science, solidarity, and hard work.