By John Smith •
Updated: 02 Nov 2023 • 10:01
One little girl, Elena, suffers the effects of the disease
Credit: Debra Butterfly Skin Charity
International EB (Epidermolysis Bullosa Awareness) Day took place at the end of October and Debra, the Spanish Butterfly Skin charity called for help to further its work.
This is a rare, degenerative and incurable condition which causes extreme fragility of the skin which affects a small number of children and their families in Spain who need constant assistance to enjoy any quality of life.
The charity which has headquarters in Marbella currently has three nurses, two psychologists, three social workers and a researcher looking after over 350 families, but urgently need two more nurses and a psychologist to guarantee the quality of care for families as an annual cost of more than €75,000.
Put simply, a spokesperson explained “one hour of nursing costs €25. If we can get 1000 people to donate €25, we can reach our fundraising target for one new nurse.
“Thanks to this, we could notably improve the quality of life for people living with open wounds and having to endure painful daily treatments which can take up to five hours a day.”
Evanina Morcillo Makow, CEO of the charity said “The charity is committed to providing the best possible level of care and to continue to ensure that as soon as a baby is born with Butterfly Skin, a team is on site within 48 hours to care for families and to provide expert advice to doctors and health care professionals in the hospitals”.
Specialist nurses, psychologists and social workers provide ongoing support either in person or remotely to families and there is a 24-hour dedicated helpline available for emergencies.
In the last 30 years they have made significant progress to improve the quality of life for people with EB. In 2015 an agreement was made so that all the autonomous communities in Spain committed to providing dressings and other medicines free of charge to families, who up until that point had covered the cost themselves.
Diagnostic testing is now also available on the national health and the specialist team at the charity includes 49 employees dedicated to helping families “until a cure is found”.
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Married to Ophelia in Gibraltar in 1978, John has spent much of his life travelling on security print and minting business and visited every continent except Antarctica.
Having retired several years ago, the couple moved to their house in Estepona and John became a regular news writer for the EWN Media Group taking particular interest in Finance, Gibraltar and Costa del Sol Social Scene.
Currently he is acting as Editorial Consultant for the paper helping to shape its future development.
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