- The funding will be used to improve the quality of life for families with Epidermolysis bullosa, a rare and currently incurable disease that affects 500 people in Spain.
- The charity was delighted to hold this tournament after 5 long months of cancelled events due to the Coronavirus crisis.
After months of uncertainty the Butterfly Children’s Charity are now able to continue with their events calendar and persevere with their important mission to raise funding to improve the quality of life for children with EB from the birth of a baby to end of life care.
155 golfers and 78 collaborators participated in this amazing sporting event. All of the funds raised will be used to support families with EB.
Professional Golfers, José Luis Sánchez Barrero and John Roethling joined “The Butterfly Children’s Charity Golf Tournament” to help with the 27 competing teams throughout the day. Sadly due to the current restrictions a prize giving ceremony was unable to take place. A trophy for the winner and 16 prizes for the players with the highest scores in both the men’s and women’s categories were distributed individually along with prizes for all of the players who were able to complete the challenges set at each of the 18 holes.
EB is a rare, incurable and genetic disease that is characterised by the extreme fragility of the skin. People with EB lack the protein or the “glue” that holds the skin together correctly. Children with EB suffer from debilitating pain every day of their lives and require daily care and treatment that can be so painful that morphine is required to care for them. “The entirety of the body is bandaged to protect the skin from the lightest touch”, explains Evanina Morcillo, Director of the charity.
“The current crisis has made everything incredibly difficult, but despite this it has been amazing to see the involvement of so many different people, supporters and businesses, all united to support a common cause. This tournament has helped to give us hope for the future, although sadly we are still struggling to cover our costs” said Ana Maria Ponce, Marketing and Fundraising Executive for the charity.
Both an economical and emotional boost
The financial damage caused by this worldwide pandemic has been totally unprecedented and the charity is facing extremely challenging times: income has fallen by 80% and this all important funding is key to continuing with their work to support families with a specialist team of nurses, social workers, psychologists and research assistant. The charity is the only existing EB support organisation in Spain.
In order for the charity to support and shield families from the reality of living with this condition they need your help. Register now for up coming events, become a member, a volunteer or visit the website for further information on how you can help. https://www.pieldemariposa.es/en/i-want-to-help/make-a-donation/
The world has stopped because of the global pandemic, but babies with EB continue to be born and they need your help now more than ever before.
About DEBRA The Butterfly Children’s Charity
The Butterfly Children’s Charity is a non-profit organisation founded in 1993 by the parents of a child with Epidermolysis bullosa (EB). The aim of the charity is to improve the quality of life for families with EB in Spain. The team of specialist workers are there to give guidance and advice to both families and medical professionals as well as working on research and medical advances to make this condition more bearable. The charity also helps to raise awareness for the condition and the difficulties and obstacles that are faced on a daily basis.
EB 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 a butterflies wing. 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.