Mum with disability refused parking permit: 'Everyone I know with EB has been refused it'

A mother who shares the same rare ‘butterfly skin’ condition as her son is campaigning for the right to a blue badge permit and for more awareness

Amanda Nugent and her son Ruaidhrí are two of 30 extended family members with epidermolysis bullosa. Picture: Elle Nugent Traynor

Amanda Nugent (47) has epidermolysis bullosa (EB), a rare genetic skin condition, commonly known as ‘butterfly skin’ due to its extreme fragility. Those with EB lack the essential structural proteins that bind the skin’s layers together, resulting in painful blisters, tears, or breaks in the skin.

Nugent, who lives in Wexford, grew up unaware of the cause of the painful blisters that would appear on her hands and feet. The birth of her son Ruaidhrí in 2013 was the catalyst for finding out it was EB.