Children from across all of 10 Rosedene Nurseries have participated in a range of activities, including the creation of a giant butterfly in support of EB awareness week.
Epidermolysis Bullosa (EB) is the name of a group of genetic skin disorders, which affects more than 5,000 people in the UK, including Louis, who is the nephew of the manager at the Yarm-based nursery. In some cases, the incurable disease can cause life-long blisters, leaving it to be coined as ‘butterfly skin’.
In the build up to EB awareness week, the nursery children designed and made over 150 butterflies, which, when put together, formed a giant butterfly display in support for those suffering with the condition.
Debra, which is the recognised charity representing those living with EB, were invited to take part, and kindly sent t-shirts for the children to wear on the day. In the total, the children and families of Rosedene raised over £600 including gift aid.
Jodie Hutchinson, manager at Rosedene Egglescliffe said: “I’m very proud of our nurseries who have all been taking part in butterfly activities in support for Debra. As a charity, Debra has been an amazing support for my family and in particular my beautiful nephew, Louis, who, since birth has always had very fragile skin.”
Ryan Baxter, Louis’ Dad, said: “Louis has got recessive dystrophic epidermolysis bullosa, which means he has a lack of collagen 7 in his skin. It’s been a very tough year, but Louis and his smile make it a lot easier.”
Alice McCullagh, director at Rosedene Nurseries said: “It was very special to meet Louis and the rest of Jodie’s family especially as Jodie has been a valued member of our Rosedene family for the past 16 years.
“The goal for EB awareness week has been to raise awareness and educate our children about the rare skin condition, which is affecting many families across the UK. "
Debra were thrilled by the work the children across the nurseries had done. “Thank you to Rosedene Nurseries for raising awareness of DEBRA UK and the painful, genetic skin blistering condition, epidermolysis bullosa (EB) during EB Awareness Week. The butterfly displays look wonderful, and it is lovely that the team involved Louis and his family too.”
We were very thankful to be featured by both BBC Tees and the Gazette, you can listen to the radio feature and read the article via the press links below.