'Butterfly skin' girl who met the King is being 'abandoned' says her mother as she highlights care failure

Published: 19:28, 1 July 2026 | Updated: 19:28, 1 July 2026 The mother of a teenager with a rare butterfly skin condition claims she could die after her care arrangements fell through at the last minute. Isla Grist suffers from epidermolysis bullosa (EB), which leaves her badly blistered and requires regular specialist treatment, with nurses visiting her Black Isle home, near Inverness, three times a week. However, she is turning 18 on Thursday, meaning she’ll be moving to adult provision – and there is nothing in place to ensure continued care after an agency drafted in to help pulled out at the last minute. Her mother, Rachael, claimed she has been battling NHS Highland for months to ensure there will be no gaps in the service as Isla enters adulthood. Health bosses had identified a care provider to deliver the service, with plans in place for staff to start last month. But Ms Grist, 50, said the family have since been ‘abandoned’ by the health board. ‘On the morning they were due to start, the paediatric team received an email to say they were pulling out,’ she said. Ms Grist said that without experts looking after her daughter’s fragile skin, her chances of surviving are limited. She added: ‘If Isla doesn’t have her bandages changed, the 70 per cent of her body that is open wounds will just get infected. 'Any infection that goes untreated could kill her. Isla is really anxious about this. Nobody should have to fight for their most basic needs in terms of their care.’ The King meets Graeme Souness, Isla Grist and her mum Rachael at the Royal Garden Party Isla Grist with dad Andy and mum Rachael Isla Grist suffers from epidermolysis bullosa (EB), which leaves her badly blistered The family have the support of former Scotland footballer Graeme Souness, who is president of the EB charity Debra and who took part in a £1million fundraising swim in 2023. On Tuesday, he joined Isla and her mother at the Royal Garden Party in Edinburgh, hosted by the King and Queen. The teen said the party allowed her to take her mind off her everyday struggles.  ‘Meeting the King was very surreal and my head will probably be spinning off its little axis for some time,’ she said. ‘If we’d known what to expect beforehand, it would have been exciting, but this was unbelievable. I don’t know if meeting the King was a dream come true six months ago, but it certainly is now.’ She said the Royal couple were ‘lovely’ and added: ‘They were very interested to know how it affects my life. 'The King even held my hand while he was talking to me, which was very special. Afterwards, it was straight back to real life, getting changed from my smart jumpsuit into my onesie in the back of the car at the palace.’ Ms Grist added: ‘The King was just so kind and understanding and relaxed with us. There were so many people there, and to be selected to meet him would have been an honour enough – but to talk in this way, and have such a deep level of understanding, this felt really special.’ A spokesman for NHS Highland said they could not comment on individual cases but added: ‘More broadly, transition from children to adult health and social care services is something we take very seriously.’ No comments have so far been submitted. Why not be the first to send us your thoughts, or debate this issue live on our message boards. By posting your comment you agree to our house rules. Do you want to automatically post your MailOnline comments to your Facebook Timeline? Your comment will be posted to MailOnline as usual. Do you want to automatically post your MailOnline comments to your Facebook Timeline? Your comment will be posted to MailOnline as usual We will automatically post your comment and a link to the news story to your Facebook timeline at the same time it is posted on MailOnline. To do this we will link your MailOnline account with your Facebook account. We’ll ask you to confirm this for your first post to Facebook. You can choose on each post whether you would like it to be posted to Facebook. Your details from Facebook will be used to provide you with tailored content, marketing and ads in line with our Privacy Policy.