💔 Meet Naomi Fields, a brave 13-year-old battling “butterfly skin” – a rare condition that leaves her skin as delicate as a butterfly’s wing. Only 5,000 people in the UK have been diagnosed with epidermolysis bullosa (EB), and Naomi is one of them. This genetic condition makes everyday activities a challenge due to the pain and immobility it can cause.
Naomi’s mum, Carly, recalls first noticing signs when Naomi was just a toddler with blisters on her hands. Despite initial misdiagnoses, Carly’s persistence for a proper diagnosis led them to discover the truth about EB. Since then, their journey has been about managing pain and avoiding triggers as there is no cure.
Carly shares her heartfelt concerns as a mum: “I worry she won’t be able to live a full life. Our world isn’t built for people like her, and as her parent, witnessing her struggle breaks my heart.”
Every day, the Fields family faces challenges most of us don’t consider, like avoiding the sun or missing out on sports. Carly speaks of the pain of seeing heatwaves forecasted and having to plan days around Naomi’s comfort and safety.
On tough days, Naomi relies on a wheelchair, unable to move without pain. And while their treatment drawer is filled with dressings and creams, true relief is hard to come by.
Yet, Naomi shines with resilience, surrounded by a network of support. Her courage and adaptability inspire not only her family but everyone who learns about her story. Carly remains hopeful, urging everyone: “Ask your doctor for a blood test – it could connect you with a community offering incredible support.” 🌼
In sharing their journey, Naomi and her mum hope to raise awareness and help others find the community and support they’ve leaned on. Let’s spread the word and make a difference! 🌟 #ButterflySkinAwareness #EpidermolysisBullosa #NaomisJourney