Understand
Parents campaign for more research after baby is diagnosed with rare butterfly skin condition
Overview
Six-month-old Ralph was diagnosed days after birth with junctional epidermolysis bullosa (JEB), a rare genetic disorder that causes skin to tear or blister at the slightest touch. His parents, Ciara and Lewis, learned how to manage the condition through daily bandaging and specialized care routines. Ciara has now launched a petition calling for increased government funding and research into rare skin conditions to find a better treatment or cure, prompting a response from the Department of Health and Social Care regarding its existing funding commitments.
Key points
- Six-month-old Ralph was diagnosed with junctional epidermolysis bullosa (JEB), also known as butterfly skin, a few days after birth.
- The rare genetic disorder causes skin to tear or blister at the slightest touch due to faulty or missing skin proteins.
- There is currently no cure and limited treatment options for JEB, requiring parents to spend hours daily replacing bandages and adapting clothing.
- Ralph's mother, Ciara, started a petition reaching over 10,000 signatures to demand increased government funding and research into rare skin conditions.
- The Department of Health and Social Care stated it had committed £1.075m over five years for projects related to epidermolysis bullosa.
- DEBRA UK, the charity for people living with the disorder, supports the petition to help secure dedicated government investment for clinical trials and treatments.