The girl with skin so fragile a hug can make it peel off
EVEN a hug can leave her with wounds similar to third-degree burns.
Seven-year-old Isla Grist’s skin is so fragile she has to be wrapped in bandages to protect her.
She is one of around 1,000 people in the UK with Recessive Dystrophic Epidermolysis Bullosa (RDEB), a rare genetic condition.
It alters the way the skin connects to tissue, meaning it can peel off, leaving large blisters and a sore, red wound. Sufferers are sometimes referred to as butterfly children because their skin is as delicate as a butterfly’s wing.
Isla’s parents Rachael, 40, and Andy, 42, from Inverness, were so worried about hurting her after she was born that for the first month they avoided picking her up and carried her on a cushion.
The effects of the gentlest graze can prevent her from enjoying playing with her ten-year-old sister Emily. Even the skin inside her throat and mouth can blister, meaning she is fed via a tube directly into her stomach.
Despite her condition, brave Isla tries to lead a normal life – having the bandages that cover her dyed to match her outfits in the hope of avoiding stares from strangers.
Mrs Grist said: ‘We don’t like to see her as different but other people do. The worst thing people have asked is if we’ve burnt her.’
She added: ‘She has to have a one-to-one carer at school to protect her from the other kids in case they bump into her.
‘We can’t pick her up under her arms and have to be very careful when giving her hugs and cuddling her because we don’t want to hurt her more.’ Isla has had many operations to help increase the movement in her hands and recently had to visit Great Ormond Street Hospital in London on a weekly basis, where her bandages were changed under general anaesthetic.
She was also on a clinical trial there paid for by the Sohana Research Fund, a charity that funds research into RDEB.
Mrs Grist said: ‘Isla’s faced so many challenges but she’s such a great kid.’ She added: ‘We look at life more positively as we’re not sure how much time we have so we enjoy things and don’t worry about what’s round the corner.’