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You're not alone

Daily Record

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December 27, 2025

Mums bond through charity scheme to help 'butterfly skin' sufferers

- BY SALLY HIND

SCOTS kids suffering from a rare "butterfly skin" disorder have been brought together this Christmas to show them they are not alone.

And two mums, from Livingston, whose babies suffer from the cruel disorder have defied the odds to form a special friendship after discovering they live just a few miles apart.

Natalie Stonehouse's six-monthold daughter, Sophie, and Emma Byrne's nine-month-old son, Rian, both have the same form of epidermolysis bullosa (EB) - a painful condition that can cause the skin to blister at the slightest touch.

The mums were brought together by butterfly skin charity Debra and joined other families with young sufferers across Scotland to make memories at a special Christmas event, hosted by Cameron House, at Loch Lomond.

Emma, 27, who suffers from EB along with her older son Nathan, six, said: "Natalie lives five minutes away. The similarities between our stories are scary.

"I obviously knew there were other sufferers in Scotland but didn't expect to meet someone so close to home.

"I never expected EB to bring me a friend.

"It's been a breath of fresh air. We talk all the time, go out and do things with the kids.

"We've not known each other long but it feels like we've been friends forever.

"It was so lovely to be at the event and to be in the same room as people who understand what you're going thorough. It brings you a real sense of calm."

Families were treated to a Christmas lunch, private cinema screening and a visit to Santa in his grotto at the five-star hotel, where they were gifted toys donated by Smyths.

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