Last Friday night, Claudia Scanlon (19) appeared on RTÉ's Late Late Show to speak about her life with EB (epidermolysis bullosa) and to raise funds for the charity Debra Ireland. Sitting alongside her was the Irish captain, Johnny Sexton, in his capacity as an ambassador for the charity.
Scanlon, from Terenure, was born with a severe form of the disorder, which affects her both externally and internally. It has left 80 per cent of her body covered in blisters, her hands and toes have fused, and she is in an electric wheelchair full-time as it is too painful for her to walk.
“It affects every aspect of my life,” she told Ryan Tubridy in a raw, heart-wrenching interview. “I wouldn’t wish it on my worst enemy. It’s a living hell and that’s the only way I can describe it.”
Yet while Scanlon was searingly honest about the limitations which her condition has imposed on her daily life, her defiance and dreams of becoming a professional make-up artist were also uplifting.
“I try to be as positive as possible because I want to live my life and I have the right and I deserve to live the life that I was given. I don’t want to sit in a corner and cry about it because I don’t want to throw my life away. I’m here and I have a life to live.”
The segment on the Late Late Show prompted viewers to donate €325,000 for Debra Ireland, which supports patients and families who are dealing with EB. It is a condition that affects an estimated one in 18,000 babies born in Ireland.
“We could not do our day-to-day life without Debra Ireland,” Scanlon said after the show. “This fundraising means so much – not only to me but to the whole EB community. The money raised will hopefully help fund a cure.”
She was the star of the show, not Sexton, yet true to type the Irish captain represented himself, the Irish team and Irish rugby superbly.
“The first thing that you see is how incredibly brave they [EB patients] are,” said Sexton. “It makes you feel a little bit bad about yourself when you come home with an injury or after a bad game and you’re giving out about the world.
“What they go through is worlds apart, and their families as well, Claudia’s mum and dad are here tonight and what they do for her is incredibly inspiring.”
Given Sexton has been such a good ambassador for the Irish team and Irish rugby, it’s always seemed slightly curious when even some home fans among Leinster’s provincial rivals like to make him the pantomime villain, and the loud booing when Sexton’s face appeared on screen from the stands during the France-Ireland game a year ago certainly portrayed them as a pantomime crowd of Shakespearean proportions.
Of course, as much as anything, it’s a backhanded compliment, not least given the memory of Le Drop which sealed the opening leg of Ireland’s 2018 Grand Slam.
Few players could have carried themselves as well as Sexton did last Saturday night. He will be a tough act to follow, in more ways that we can perhaps even envisage.
