FAMILY HOPE GREATER AWARENESS OF RARE SKIN CONDITION WILL BE PART OF LIAM’S LEGACY – TEXT BUTTERFLY TO 50300

28 October 2016 No Comments by The Northern Standard

By Cianna McNally
 
“Our hearts are really breaking. We don’t have our funny little man anymore but we are asking people not to forget other kids with EB.”

  This poignant appeal came from Kathleen Hagan, grandmother of eight-year-old Liam Hagan from Threemilehouse who passed away from Epidermolysis Bullosa (EB), a rare and painful genetic skin condition, at the beginning of October. 

  Sadly Liam was due to act as mascot for this weekend’s Leinster v Connacht Guinness PRO12 match in the RDS Arena on Saturday and a tribute will be paid to him at the game. His cousin and friend, 10-year-old Adam McCormick, who is also from Threemilehouse, will lead the team out in Liam’s memory and Leinster Rugby has asked all supporters to acknowledge Liam and his courageous fight at the game, which kicks off at 5.15pm. Liam’s family will also be in attendance at the game and more than a few tears will no doubt be shed when Liam is applauded ahead of the match.

Kathleen and her daughter, Liam’s mother, Gráinne spoke to The Northern Standard this week to encourage people to support EB Awareness Week, which began on Monday, 24th October and continues until Saturday.  

  Liam had a severe form of the ‘butterfly skin’ disease EB, which left more than 80% of his body covered in open wounds. This incredibly painful condition causes the skin layers and internal body linings to blister and wound at the slightest touch. One of only 300 people in Ireland with EB, Liam, who could walk but used a wheelchair when necessary, had to be bandaged from head to toe to protect him from everyday life. Eating and drinking also caused him pain and almost two years ago a peg was put into his stomach to allow …
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