Claudia Scanlon and Johnny Sexton join Ryan Tubridy on emotional Late Late Show interview
A brave teenager battling a crippling skin disease has thanked big-hearted RTE viewers after more than €325,000 was raised for ‘Butterfly skin’ charity, DEBRA Ireland.
Claudia Scanlon, 19, and DEBRA ambassador Johnny Sexton, generated the huge public donation as they appeared on last Friday’s Late Late Show to talk about the painful and debilitating condition, epidermolysis bullosa (EB). Claudia, from Terenure, Dublin, has the severe form of the genetic disorder, which has left 80% of her body covered in blisters – and needs a wheelchair because it is too painful for her to walk.
She told host Ryan Tubridy that DEBRA Ireland is desperately trying to fund research into finding a cure for the disease, which affects around 300 people in Ireland.
“I was born with a genetic skin condition that affects me both internally and externally,” said Claudia, whose hands and toes are now fused because of the illness.
“It is one of the worst conditions out there and I wouldn’t wish this upon my worst enemy.
“It is a living hell and that is the only way that I can describe it.”
But despite the immense problems caused by her EB, Claudia told Tubridy that she tried to remain positive.
“I don’t want to sit in a corner and cry about it,” she said. “I don’t want to throw my life away. I have a life to live and I want to do the best I can.”
RTE viewers responded on Friday night and over the weekend by donating €325,000 after a link to the charity’s website was broadcast during the show.
“This is a tremendous amount of money, and I cannot thank everyone enough for their generosity,” said Claudia. “This fundraising means so much – not only to me but to the whole EB community.
“The money raised will hopefully help fund a cure. We love you all and can’t thank you all enough.”
During the show, Ireland rugby captain Sexton, who has worked with the charity for 12 years, praised Claudia for her bravery.
“The first thing that you see it how incredibly brave they (EB patients) are.. 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.” DEBRA Ireland CEO Jimmy Fearon said he wanted to thank everyone who helped raise the six-figure sum for the charity.
“Once again, the Irish public have shown how incredibly generous they are. We cannot thank them enough,” he said.
Tubridy, on his RTE 1 radio show today, described the public’s response to the fundraising appeal as “extraordinarily generous”.
EB is caused by missing proteins which bind the skin together. As well as funding medical research to find a cure for the disease, DEBRA Ireland also supports patients and their families with day-to-day care and psychological supports.
If you missed your chance to donate, you can still do so at: debra.ie.