Claudia’s rare skin condition has her mother on a mission
By Maurice Garvey
PARENTS of children with the rare and extremely painful skin condition Epidermolysis bullosa (EB) go to extraordinary lengths to care for their children.
One such parent, Liz Collins (49), from Whitehall Road in Terenure, will celebrate her 50th birthday in March by trekking through the polar region of the Arctic to raise funds for EB support group Debra Ireland.
Liz’s daughter Claudia Scanlon (13) requires up to five hours of dressing every second day, to treat and care for her skin blisters, while the slightest touch can cause severe pain.
EB causes a breakdown in the natural proteins that hold the skin together, and is currently incurable.
“Every single thing in her life is a battle,” said Liz, who fought the HSE for six years to get an outreach nurse to provide assistance.
“The biggest problem with EB is when the child is born, they send you home to dress the child yourself. It is overpowering, you can’t keep on top of it, even giving it 100 per cent. We (mothers) are not nurses, and shouldn’t be sent home from hospital without any support or training.”
Liz and her husband Gary Scanlon have adapted their life to cater for the debilitating disease.
“Everything in her life is dictated by the illness,” said Liz.
“We moved from a house on Clogher Road to a bungalow because the stairs are too much. We can’t go anywhere too hot on holidays. I switched jobs from chef to a management role and do three days instead of five.
“Myself and my husband have a dormant gene, which affects one in a thousand. We made the decision not to have another child because there was a 25 per cent chance in pregnancy. But it’s not something you can detect in the womb.”
She continued: “Claudia is truly amazing. She does ballet every Tuesday after school, is involved with Kevin’s GAA Club as an ABC mentor at the weekends, loves music and has hit all her milestones.
“It is especially tough on her now as she is a teenager. Her favourite thing is going to Dundrum, but some people can be inconsiderate, gawking at her.”
Liz and 19 other women are currently trying to raise €5,500 each for their Arctic challenge, which will see them in a two-day training camp and three-day trek across a part of the polar region.
Debra Ireland was set up by families living with EB who had no support for the distressing condition.
Liz continued: “It puts life into perspective. I wouldn’t be doing mini-marathons or going on this once-in-a-lifetime trip, or be a parent ambassador for Debra Ireland if not for Claudia. The charity is all about research and quality of life. My mission is to ensure that the next generation of EB sufferers have the right supports in place.”
EB Awareness Week is on October 23 to 29.
Fitness instructors where Liz trains at Dublin Fit Club in Sundrive are offering free sessions in a raffle on Tuesday to support the Arctic challenge – whilst a fundraiser takes place in Peggy Kelly’s on October 29.
Anyone who wishes to support the 20 women going on the Arctic challenge can call Liz at 087 9656784 or visit www.debraireland.org