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Celebrate with us: join the 304 families with Butterfly Skin in Spain

  • 304 families: the most recent campaign launched by the Debra Butterfly Children’s Charity to raise awareness for children with Epidermolysis Bullosa. Known as the most painful condition you have never heard of.  EB is a rare and extremely debilitating disease that gives no respite over the festive season for families who have to live with the complications of this affliction every day.
  • Using social media the Marbella based charity really want to bring to light the reality of living with this condition and to ask for help so that families can continue to receive the support and healthcare that they so desperately need.
  • Epidermolysis Bullosa, also known as Butterfly Skin is a rare, genetic and currently incurable disease that is characterised by the extreme fragility of the skin.  The DEBRA Butterfly Children’s Charity is the only national organisation offering support to families by a specialist team of healthcare workers in Spain.

 

Our world has been turned upside down by the global pandemic, we are living through challenging times with restrictions on our freedom, a curfew and the many terrible consequences of the virus, but we are living under these conditions temporarily: butterfly children living with this unbearably painful and incurable condition suffer every day of their often short lives and there is never any relief from the day to day of EB.

The campaign emphasizes the need to make EB more visible so that people can really understand the veracity 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.

With messages that will be repeated over the holiday period to increase engagement: 304 families and together we would love to celebrate Christmas Eve with you, Christmas with you, celebrate New Years with you, watch the processions with you and celebrate three kings with you.  The campaign includes the portrayal of a series of images that show children with Butterfly Skin with a member of their family:  viewers will discover the physical and mental health implications of this disease and understand the desperate need for support.  “By becoming a member and making a contribution to the charity, you can become an integral part of what we do.  This will make a real difference to the day to day for 304 families who only have us to support them” commented a member of the team from the charity.

The campaign also incorporates videos from children with EB who tell us what they most love about Christmas and their wishes for the festive season.  Through the testimonies of the twins, Carla and Noa as well as Dani, Adrian, Leo and Andra we discover that they love everything that any child of their age would enjoy:  the presents, Christmas Eve, festive treats, but what is so very apparent is the empathy they show towards others.  “They could wish for less pain or less suffering, but what they wish for so poignantly is to make sure that no one is left without food or presents during Christmas”, commented the director of the organisation.

 

 

The only national support organisation

 It is important to underline the importance of the charity, as it is the only one of its kind in Spain.

Their specialist team of nurses, psychologists and social workers are available to train and advise health care workers and medical teams from the National Health Care system as well as offering support to families.

They are there for families through all of the complications and challenges of this disease: from birth to end of life care.

With the birth of a newborn baby with EB, the team are immediately dispatched to be on site for parents at this very distressing time.  The specialist health care team are there to explain how to care for babies and they offer all of the information and support that families so desperately need during this very difficult and emotional time.

“The Coronavirus pandemic has highlighted the urgent need for our health care system to look after us in very difficult times.  In our case, the children we look after are always in a situation of extreme vulnerability and they only have us.  We have to make sure we can continue to be here for them,” commented the director of the charity.

The social and economical consequences of the pandemic have had extremely serious consequences for the Charity and they now find themselves with an 80% loss of income and are unable to guarantee the support to families that they have been able to offer to date.

As an organisation which exists primarily thanks to the generosity of individuals they must ask again for people to respond to a request for help and to reverse this very challenging situation so that families like those of Carla and Noas, Dani, Adrian, Leo and Andra can continue to receive the help they need.

About The Butterfly Skin Children’s Charity

The charity, founded in 1993, by parents of a child with Epidermolysis bullosa (EB) or Butterfly Skin acts as a fundamental support system for children with EB and their families in Spain.  The specialist team works to improve the quality of life for people with EB.  The non profit organisation works to advise and guide both families and medical professionals as well as striving to co-finance research projects and promote visibility on the many difficulties and barriers that affect people with Butterfly Skin every day.

You can make a difference today by visiting the website to find out more, www.pieldemariposa.es by making a donation or by becoming a member.

About Butterfly Skin

The condition is also known as Butterfly Skin because their skin is as fragile as a butterfly wing.  EB is a rare and incurable disease that currently affects 500 people in Spain.  The condition is also known as Butterfly Skin because their skin is as fragile as a butterfly wing.  The lightest touch causes severe blistering and open wounds that never heal.  This condition causes lifelong disability, extreme pain and social isolation.

 

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