Butterfly skin charity DEBRA brought Christmas to Scots families impacted by the agonising condition, with a special Santa visit and gifts at a luxury hotel – and priceless connections with other EB families.
The charity’s Scottish team organised a special gathering at Cameron House for 15 familie s, to give them a festive treat but more importantly let them meet and talk with other adults and kids who deal with the same challenges.
Young Lewis Collins, 8, from Darvel has EB and was there with his brother Alex, 11, and their parents Thomas and Jo, who are regular Debra supporters but found this event really connected with Lewis.
Jo said: “We had a lovely day at the Christmas event. Alex loved the little private cinema and Lewis was very excited to go to Santa’s grotto and meet the man himself.
“Thomas and I have been involved with quite a lot of Debra fundraising since Lewis was born but a lot of the events have been things we’ve done separately like attending the annual ladies lunch, going to the sportsmen’s dinner, and in Thomas’ case running the London marathon. It was lovely for us to do something as a family and catch up with/meet other EB families.
“The best part was Lewis being able to meet other people, especially children, with EB. It can be quite hard for him to understand why he is the only one in our family with EB. We went to the UK Debra members weekend when Lewis was wee but he hasn’t really met anyone else with the condition since then.”
Cameron House laid on a lavish lunch for everyone, plus a movie screening and Santa grotto visit as well as a chance to play in his workshop – and Smyth’s Toys donated presents for all the kids.
And Jo said the day was a huge success – and was keen to thank Debra Scotland’s Laura Forsyth and Karen Power for organising it all, as well as Cameron House and Smyth’s.
But the best gift for the family is the improvement in young Lewis’ condition as he has grown older, making day to day life much less painful for him.
“Lewis has EB simplex – generalised severe. This means that his skin can blister or tear when it’s exposed to any kind of friction. Lewis’ skin has improved massively since he was a baby. We had to hold him on a special pillow to stop us damaging his skin and all his clothes had to be inside out to stop the seams causing blisters.
“We could spend up to two hours bathing him, popping blisters and dressing wounds. Now we pop any blisters in the morning before school and at night before bed. EB blisters aren’t self-limiting so they would just keep getting bigger if we didn’t pop them.
“We’re delighted that Debra Scotland are going to put on more events like this where we can keep in touch with other families.
“Cameron House was a gorgeous setting for the day. The Santa’s grotto was fab and the staff were so welcoming.
“We’re very grateful to Cameron House, Smyth’s Toys – Lewis got a pet dinosaur which he loves and Alex got a fantastic NASCAR Lego set – and especially to Karen and Laura at Debra Scotland for organising the event.”
Laura Forsyth runs Debra Scotland with events organiser Karen Power’s support, and they were incredibly happy with the response from the kids and adults alike.
Laura said: “We pulled this event together as we felt we really wanted to give families in Scotland a lift this Christmas, and more importantly the chance to connect with others in similar situations.
“We have seen first hand how impactful it can be to meet others just like you, who understand – whether it’s two kids with EB, their parents, or adults with the condition and then their kids meeting.
“That moment where they connect and see they’re not alone is really powerful.
“We want to help more people connect that way so we will definitely do more events through the year.
“Thank you to our friends at Cameron House especially CJ who has been so supportive of our work – the team are so incredibly welcoming. And to Smyth’s for the amazing toys, for ALL the kids which was a lovely gesture.
“We’d like to do the cinema event as a regular event for the EB community, as it’s a small intimate cinema, very comfortable and room for wheelchairs and so on – it feels like a safe space for the members to meet and chat.
“Merry Christmas to all from Debra Scotland – you can BE the difference for EB.”
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