EB Awareness at Rosedene

Last week was a powerful reminder of the strength found in unity, compassion, and the unwavering spirit of children and families affected by Epidermolysis Bullosa (EB). Epidermolysis bullosa (EB) is a rare genetic skin disorder characterized by fragile skin that blisters easily, often in response to minor injuries or friction.

Across our nurseries, we’ve taken part in EB Awareness Week with a series of meaningful activities, fundraising efforts, and celebrations that brought our community together in support of Debra UK and one very special little boy, Louis.

Butterfly-Themed Activities

Throughout the week, our children explored the theme of butterflies, symbols of fragility and beauty, through creative crafts and play. These activities helped spark conversations about EB and encouraged empathy and understanding, even among our youngest learners.

Inside-Out Day - Friday 7th November

On Friday 7th November, we hosted an Inside-Out Day, where children and staff wore their clothes inside-out to represent the challenges EB warriors face with their skin. This fun and visual initiative helped raise awareness and started important conversations, and thanks to the generosity of our community, we’ve raised over £500 for Debra UK!

Louis Turns 3 – A Flash-Themed Celebration

This week also marked a very special milestone: Louis’s 3rd birthday! Louis, who lives with Recessive Dystrophic Epidermolysis Bullosa (RDEB), is a true superhero in every sense and very close to those at our Egglescliffe nursery. We celebrated with a Flash-themed party, filled with joy, laughter, and love. Louis’s strength and spirit inspire us daily, and it was an honour to celebrate him during this important week.

To mark EB Awareness Week, Louis’s family shared a deeply moving message:

“EB Awareness Week is a time of reflection for us as we think back to the day almost 3 years ago when our life took an unexpected turn. We can vividly recall the emotional turmoil, the heartache, and the fear that engulfed us upon learning that our baby boy had RDEB, the severe form of epidermolysis bullosa. It felt as though our heart was shattering with every breath as we grappled with the weight of that news. Now, three years later, we are here to share a different story - a story of hope and resilience. To any new parents facing a similar diagnosis, we want to reassure you that it’s not as gloomy or frightening as it may seem at the outset. We are raising a true hero! Our son brings immense joy, love, and happiness into the lives of those lucky enough to know him. Yes, he has his struggles, but he also has a spirit that shines brightly, filled with confidence and all the delightful quirks of childhood. While our journey is punctuated with challenges, we have come to appreciate the depth of sweetness that accompanies the bitter. Our child’s determination inspires us and reminds us to maintain our composure, even when emotions threaten to overwhelm us. This experience has transformed us in profound ways, and for that, we are endlessly grateful for the tough moments that make the joyful ones all the more precious. As we celebrate Louis’s third birthday during this awareness week, we wholeheartedly believe that he, and all the brave EB warriors, are destined to change the world. Let’s continue to spread awareness about EB!”

Continuing the Mission

We are incredibly proud of the compassion and generosity shown by our nursery community. From creative activities to heartfelt conversations and fundraising efforts, this week has been a testament to what we can achieve when we come together.

Let’s keep the momentum going.

Let’s keep talking about EB.

Let’s keep supporting families like Louis’s.

And let’s keep believing in the power of resilience, love, and community.