‘Sophia will do Irish dancing or football but afterwards it’s like her feet are burning’ – parents of ‘butterfly skin’ sufferer tell of brave daughter’s struggle

Sophia Dawson, who has epidermolysis bullosa (EB), with the bag she designed for Mace. Photo: Naoise Culhane

Arlene Harris

Like many teenagers, Sophia Dawson has a busy, active lifestyle and loves socialising, playing sport and dancing. But unlike others of her age, her passion for living life to the full leaves her in excruciating pain as she deals with the daily struggle of life with epidermolysis bullosa (EB).

Her father, Mark, also has the condition and while his is somewhat easier to deal with, he finds it very difficult watching his daughter cope with the painful side effects of this rare skin condition.