A brave mum-of-two is to abseil from the roof of Croke Park to help the charity which supports her daughter.
Dublin mum Rachel Connors is undertaking the nerve-jangling challenge to raise vital funds for Debra, which helps 300 people, including her little girl Casey, cope with the devastating skin condition, epidermolysis bullosa (EB).
The schoolgirl, who celebrated her 12th birthday last week, has the most severe form of the genetic illness and requires extremely painful bandaging several times a week to cover blisters which erupt on her fragile skin.
Rachel, who lives in Liffey Valley, is putting her fear of heights aside in honour of her only daughter and will be joined in the challenge on March 28 by her sister and Casey’s aunt, Samantha, from Clondalkin.
Art and fashion-loving youngster Casey’s good humour and quick wit hides the huge burden of pain she is forced to endure every day.
EB, also known as ‘Butterfly Skin’ disease, is caused by the absence of essential proteins that bind the skin layers together.
Bandage changes, often lasting three hours at a time, are needed to protect Casey’s skin, 70% of which is covered in open wounds.
“Sometimes she goes through a down week and things can get very hard for her,” said Rachel, who is also mum to Jayden, 14.
“But then she’s back, and one day, hopefully, we can tell her there will be a cure but until then, we want her to do as much as she can to be like other children.”
The cruel nature of EB means that even the slightest touch can create devastating blistering – and active children such as Casey often need double bandaging during physical activity.
Despite the constant pain, aunt Samantha says the fun-loving youngster is fearless, has an incredible sense of humour and an appreciation of life’s simple things.
The abseil at GAA headquarters is her way of supporting her niece and the charity which constantly stands in the family’s corner.
“Every day, putting on her shoes is a challenge, trying to pick up a pencil is a challenge, the rest of us do things like this every day and take them for granted,” says Sam, an accounts assistant with a printing firm.
“There are so many things Casey can’t do but when you see her, she is full of joy.”
Casey, who one day wants to set up a YouTube channel to display her artwork, and Jayden, will be in Croke Park to watch their mum and aunt navigate the 150ft abseil.
Rachel says she is “forever grateful” for Debra’s support.
“They are always there at the end of the ‘phone, they helped me move to a house more accessible for Casey; they are such a good support.”
Samantha admits to being “a little nervous” about the dizzying feat.
“It is a challenge, but my little niece has EB and she has challenges every single day.
“If she can get through every day and still end up with a smile on her face, I’m sure we can abseil down.”
You can support Rachel and Sam’s fundraising challenge for Debra at: www.idonate.ie/fundraiser/Rachel-Samantha2
