Some Spanish children suffer from one of the world's rarest diseases – Euro Weekly News

See Adria’s story at https://vimeo.com/638774873 Credit: DEBRASOME Spanish children suffer from one of the world’s rarest diseases and because numbers are small there is little support from the public health service.DEBRA the Butterfly Children’s Charity founded in Marbella celebrated International Butterfly Skin Day on October 25.To coincide with this, it released a documentary which gives viewers the opportunity to empathise with and understand the day-to-day tribulations of a family with Butterfly Skin.This organisation is the only support group for families with Butterfly Skin in Spain: a rare and incurable disease, which currently affects more than 500 people in Spain.It is characterised by the extreme fragility of the skin, leading to lifelong pain and disability.A short documentary and a series of videos published on social media portray the life of a five-year-old superhero Adria with Butterfly Skin who faces and overcomes the very many obstacles and challenges of living with this condition every day.In a collection of personal testimonies from families and their support team they underline the sadness and frustration felt due to the lack of support they receive from the National Health Service and the shortage of funding for research.On International Butterfly Skin Day, they appealed for a public…
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