Debra Ireland asking for support for a leap of bravery by Liz

Mum of three, Liz O’Donoghue, is leaping out of a plane at 13,000 feet to raise awareness about EB.

Lis is a primary school special needs assistant (SNA). She said her first-ever parachute jump has been inspired by the bravery of an 11-year-old Casey, who lives with the most severe form of EB.

Casey Connors was born with EB and battles pain every day as a result of the agonising blisters which can erupt on her skin at the slightest touch.

But despite her devastating symptoms, Casey, attends school like most other children her age.

SNA Liz said she had never heard of EB – also known as Butterfly Skin due to the fragility of the skin – until she became Casey’s full-time classroom helper.

“It is one of the worst illnesses ever,” said Liz, whose daring jump next month will raise funds for national EB charity Debra, which supports Casey and her family as well as 300 other people in Ireland living with the condition.

“So that’s the real point of the skydive, to raise awareness and tell as many people as possible about this terrible disease.”

EB is caused by the absence of essential proteins that bind the skin together.

As yet, there is no cure and in the most severe cases, such as Casey’s, regular bandage changes are required to treat painful blisters.

But, according to Liz, Casey rarely complains and is great company.

“She has a great sense of humour and we have a lot of fun,” said Liz. “We have little to moan about, really, when you look at someone with EB.”

Casey, Liz added, is fed at night via a tube known as a PEG (poercutaneous endoscopic gastrostomy), which is inserted into her stomach. 

“I recently asked Casey what was the worst thing about having EB? Is it kids looking at you? Is it your skin? And she said ‘no, it’s the PEG’.

“On top of her bandage changes, she has to lie there for four hours at night as she is fed nutrients through her stomach. That’s tough for a little girl.”

Liz is taking the plunge on March 10 in the skies above the Irish Parachute Club in, Clonbullogue, Co Offaly.

“I’m doing a tandem jump with an instructor, so not a lot of training is required,” she said.

“I’m looking forward to it. I just hope we are not hanging around too long on the day, getting nervous.

“It’s my mother’s anniversary that weekend and I’m hoping to hear her say: ‘Liz, it’s not your time,’ as I jump out the plane.”

To donate to Liz’s fundraiser, visit https://www.idonate.ie/fundraiser/LizODonoghue

ENDS

Photo shows Liz O’Donoghue (55) and Casey Connors (11), who was born with the painful skin condition epidermolysis bullosa (EB). Pic credit: Liz O’Donoghue / Debra