“With you for a lifetime” is the latest campaign by DEBRA the Butterfly Children’s Charity. A powerful campaign was created to raise awareness and underline the sad reality that this condition is both chronic and incurable.
Eight families tell us their story of what it is really like to live with Butterfly Skin (Epidermolysis Bullosa).
Butterfly Skin is a rare condition that causes extreme fragility of the skin. Painful wound care treatment and bandaging can take up to 5 hours a day.
DEBRA needs your help to ensure families continue to receive the medical, psychological and social help they so desperately need.
Javi (2 years old), Mia (5), Victoria (7), Elena (8), Andra (11), Itziar, (21), Juan Antonio (37) and Puri (68) are the faces behind this campaign by photographer Martin Corradini (Más Positivo Producciones) and videographer Alejandro Deluca, demonstrating the barriers they face as well as the strength and bravery that they show at all times.
Uncertainty, obstacles, processes, and pain
“Uncertainty about the future, suffering, dependency and social rejection” are some of the hardest elements of this condition.
“The obstacles that they face at every life stage are all very different. Fear and uncertainty are always there with the birth of a newborn. However, as they grow there are other challenges such as inclusion at school, university, the workplace, etc.”
“There is light and darkness throughout all of these stages. But the common feature is the daily painful wound care treatments”
“The skin has different proteins that make it resistant. People with Butterfly Skin don’t have the protein that holds the different layers of the skin together. Their skin is so fragile that the lightest touch can cause wounds and blistering. They have to be bandaged and go through painful wound care treatment every day. This can take between 1 and 5 hours a day,” said Evanina Morcillo Makow, director of the charity.
As well as the wounds, Butterfly Skin also leads to both muscular and skeletal retractions. There are also medical complications affecting the eyes, mouth and oesophagus. Even just eating, walking, or a simple hug can be extremely painful.
“There is also the psychological damage that is inherent for people with this condition. As a rare disease, they face the looks, questions and social rejection. Often, this can hurt more than the open wounds,” commented the director of the charity.
DEBRA exists so that their journey can be made a little easier. Furthermore, it is the only national organisation available to support and improve the quality of life for families.
How can you help Debra to help the butterfly children?
Despite the dedication and services provided by the charity, this is not enough. They are appealing for your help to continue to support families “This can be done through making a donation, by becoming a member of the charity (pieldemariposa.es), by donating pre-loved goods to the charity shops or by getting involved” this can all make a difference to the lives of these families.
To continue to raise awareness for the condition and the plight of these families a temporary photographic exhibition will be travelling to different cities throughout Spain.
The first one will take place at the Art-Quarium space at the Malaga bus station from the 26th of October to the 13th of Nov.
The next will be at RENFE Malaga María Zambrano train station from the 8th to the 20th of November.
About the Butterfly Children’s Charity
The charity, founded in 1993 by the parents of a boy with EB, is the only organisation in Spain that supports children and their families. Moreover, it works to improve the quality of life for families.
The team of specialist nurses, psychologists and social workers help by offering advice and information to both national health service doctors and health care workers whilst acting as a support system for families from the birth of a child to end-of-life care. The team are devoted to providing the best possible level of care and support.
The charity ensures that a team are dispatched to be with a newborn within 48 hours of the notification of birth. To be with families and to offer them the support they need at this extremely difficult time.
EB (Epidermolysis bullosa) is a rare, incurable and genetic disease that is caused by the extreme fragility of the skin. It currently affects 500 people in Spain. The skin acts as our first line of defence against the outside world, but in the case of children with EB, their skin is as fragile as the wing of a butterfly. The lightest touch causes blistering and painful open wounds. Daily bandaging to protect the skin can take up to 5 hours a day and is so painful that morphine is required. This rare condition causes extreme disability and constant pain; the simple acts of eating and walking are often accompanied by severe pain and distress.