Celebrating a special birthday while raising awareness of EB

A four-year-old boy living with a rare and painful skin condition celebrated his birthday surrounded by friends at Rosedene Egglescliffe, as children and staff across the nursery group came together to raise awareness of epidermolysis bullosa (EB).

Louis, who was born with the incurable genetic condition, visited the nursery to receive birthday gifts, including a selection of wooden musical instruments. His celebration coincided with EB Awareness Week, a cause that has become deeply personal to Rosedene Nurseries since his birth.

Known as "butterfly skin", EB causes the skin to blister and tear from even the gentlest touch. For Louis and hundreds of other children across the UK, everyday activities that most people take for granted can cause significant pain, making greater awareness and support vital.

For the past three years, Rosedene has marked EB Awareness Week in honour of Louis, whose aunt, Jodie, manages Rosedene Egglescliffe. What began as a personal cause for one nursery has grown into a group-wide initiative, helping hundreds of children and families learn about EB while supporting the work of DEBRA UK, a charity Louis’ mum, Leanne describes as “a lifeline for families dealing with EB”.

This year, children across all 11 Rosedene nursery settings marked EB Awareness Week by dressing as butterflies - a symbol associated with the condition -, creating butterfly artwork and wearing their clothes inside out.

Children and staff wore their clothes inside-out to highlight how people living with EB often wear their clothing this way to prevent seams and labels from rubbing against their sensitive skin and causing painful irritation.

The awareness activities provided an opportunity for staff to have age-appropriate conversations with children about the importance of kindness and understanding that everyone is unique.

Alongside the awareness activities and Louis’ birthday celebrations, Rosedene Nurseries is making a donation to DEBRA UK, the national charity supporting people living with EB, funding pioneering research and providing practical and emotional support to families living with the condition.

Jodie, manager at Rosedene Egglescliffe and Louis’ aunt, said: “Every year since Louis was born, every one of our settings has been involved in EB Awareness week to show their support and raise awareness. I’m super grateful for this because the more people who understand EB, the more likely we are to one day find a cure.

“Seeing all of our children embrace kindness and curiosity through these activities makes us incredibly proud."

Leanne, Louis’ mum said:“Rosedene is absolutely amazing. From the day that Louis was born and then every year since, he’s had a little party here and they’ve made him feel so special. We absolutely love them and so does he!”