A 14-year-old girl from Co. Meath is the driving force behind a new nationwide campaign being run by MACE to raise awareness of epidermolysis bullosa (EB) which is a rare and currently incurable genetic skin condition often referred to as “butterfly skin.”
Sophia Dawson, who was diagnosed with EB shortly after birth, has designed a limited-edition tote bag that is now on sale in MACE stores [in COUNTY and] across Ireland, with proceeds going to Debra, the national charity supporting those living with EB, their families, and carers.
Sophia’s special design features a butterfly as the symbol often associated with the fragility of skin affected by EB, reflecting both the reality of her daily experience and her determination to raise awareness and grow support for others with the condition.
Despite living with constant blistering and pain, particularly on her feet, Sophia plays as a goalkeeper for her local football team in Donacarney, where fellow players and coaches have rallied around her with unwavering support.
“I wanted to create something that would help people understand EB and what it’s like to live with it every day,” said Sophia Dawson. “Designing the tote bag was a way for me to turn something painful into positive action. I hope people will carry it with pride and help spread the word.”
Sophia’s mother, Aisling, added: “Thank you to Debra, and all the MACE retailers for their support in helping Sophia share her design and experience. We hope it can lead to greater recognition of EB and more consistent state support for families that are impacted.”
Keith Crawford, Sales Director at MACE, said: “We are immensely proud to be partnering with Sophia and Debra on this campaign. She has demonstrated incredible creativity and resilience and our retailers around Ireland have been resounding in wanting to support her and Debra with this initiative. We know there will be a positive response from our customers in communities all over the country. We can’t wait to see our MACE Debra tote bag being used throughout the country!”.
The limited-edition tote bags are available now in MACE stores, with proceeds going toward essential services, research and advocacy efforts led by Debra Ireland.
