2023 Winner
ISLA GRIST
Teenage ‘Butterfly Girl’ who inspires everyone she meets with her bravery despite living with a cruel and agonising condition.
Isla’s skin is so fragile even a hug can leave her with severe wounds. For the first six months of her life, her parents Rachael and Andy carried her around on a pillow as the slightest knock or rub could tear her skin.
She suffers from epidermolysis bullosa, which means she lacks the collagen responsible for holding skin together. Any friction causes her skin to peel off, leaving large painful blisters and sore red wounds which can cause scarring. Sufferers are sometimes referred to as butterfly children, because their skin is as fragile as a butterfly’s wing.
Now 14, Isla’s condition is so severe even the inside of her throat can blister, requiring her to be tube fed and she has spent most of her life wrapped head to toe in bandages and needs a carer at school. She has had to endure frequent visits to Great Ormond Street Hospital for treatment and has had more than 60 operations.
Yet despite being in constant pain, the teenager, from the Black Isle in the Scottish Highlands, refuses to let life get her down and inspires everyone she meets.
Footballing hero Graeme Souness, who has helped to raise £500,000 for DEBRA, a charity which supports Isla and funds research into a cure, said: “Isla inspires me every time I am in her company. She has courage and bravery on a completely different level to anything I have ever witnessed. She is in constant pain but always smiling.”