We held our family Christmas party in December in the Clayton Hotel, Cardiff Lane, who once again pulled out all the stops to help create a really lovely day for our families. It is really special to see our families getting together taking a break from EB and enjoying themselves.  We were also joined by some new families and we were so happyh to see them meet up and share experiences with each other.

Eve and Deirdre, our Family Support Team

Everyone got to mingle and play some games before lunch after which the littles ones were entertained by a magician. We were then honoured by an appearance by Mr Claus himself who had a chat with everyone and got to update his naughty and nice list, and our Family Support Team Eve and Deirdre even got to sit on Santa’s lap! Once everyone had met Santa, and the littles ones were on a suitable sugar high from their selection boxes, we waved good bye and turned our minds to planning our next family day.

Maria with mum Gunita and Santa

These occasions are a really important opportunity for our families to enjoy a well-deserved break from the daily stresses of living with EB. They are also a valuable time for our families to meet and support and learn from each other. Given the rarity of EB they provide a unique occasion to be in a room surround by other people who understand the EB journey. As part of the Family Support team Deirdre and Eve enjoy getting to know our families better in a relaxed and fun environment.

Casey with mum Rachel

Respite support like this is vital when you’re dealing with a condition like EB that never stops challenging our famlies. Our main aim with events like this and all our respite support  is to remind our families that even in the hard times with all the challenges that EB brings it’s important to make time for family fun! Thank you to all our families for joining us and to all our supporters for helping us continue to provide special days like this. We are already looking forward to our next family event!