THE ASHES of a Scottish teen who died of a rare skin condition began a journey around the globe at the weekend, by motorbike.
Alexandra Hood, whose grandmother is from Waterford, lost her battle with the fragile skin condition epidermolysis bullosa (EB) in 2008 at the age of 19.
Speaking on Saturday, Ms Hood’s father, Robin, said: “Alex said she wished she could live longer to see more of the world.” Mr Hood, now a fundraiser for EB charity Debra Ireland, came up with the idea of sending the ashes around the world to raise awareness of the disease. Ms Hood’s ashes began their journey in Waterford on Saturday, where 80 bikers brought them to a reception at Farmleigh House hosted by Ray D’Arcy.
Liz Scanlon from Crumlin has a daughter Claudia (6) who was born with the disease. “EB is not even listed as a chronic illness when you apply for a medical card, yet our kids are dying from it,” said Ms Scanlon. “Events like this help people to know about EB and that’s a great support to us.”
