THERE are now 304 families who belong to the Debra Butterfly Children’s Charity which is dedicated to helping those afflicted by the rare disease Epidermolysis Bullosa (EB) and is desperate to continue to raise money to investigate causes and treatment.
The charity suggested that although the majority of us have had our lives turned upside down by the global pandemic can at least assume that it is a temporary problem for most but in the case of children with EB they suffer every day of their lives.
A new campaign emphasises the need to make EB more visible so that people can really understand the reality of living with this condition and what life is really like for the 304 families that belong to the organisation.
“We want to reach out and bring people together virtually to show the reality of what it is like to live with open wounds and painful daily treatments. There is no break from this for families over Christmas. The wounds will still be there and the suffering continues,” commented director of the charity, Evanina Morcillo Makow.
To find out how you can help tackle EB visit https://www.pieldemariposa.es.
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