Saturday 24 March 2018

'We're completely in awe of her... She's like a brave, brave warrior' - Teenager Claudia battling rare condition

Like most teenagers, Claudia Scanlon loves music and clothes. But she also has epidermolysis bullosa, a condition that causes her discomfort and great pain. Her mother Liz tells Joy Orpen, in spite of it all, Claudia is a real warrior

Liz Scanlon and her daughter Claudia. Photo: Frank McGrath
Liz Scanlon and her daughter Claudia. Photo: Frank McGrath

When athletes perform well, they may end up with a medal or a trophy, like the coveted Sam Maguire Cup. Similarly, people who save lives are often publicly celebrated.

But what about heroism on a personal level? There are individuals who face huge challenges in their lives, but they get little recognition for their heroism. Someone who does deserve a gold medal for gutsiness in the face of adversity is 14-year-old Claudia Scanlon from Terenure.

Claudia is living with epidermolysis bullosa (EB), which is also known as 'butterfly skin' because it causes the skin to be as fragile as a butterfly's wings. It's a devastating condition, yet Claudia remains cheerful and optimistic.

There are 300 people living with EB in this country. According to Judith Gilsenan of Debra Ireland: "EB causes the skin to blister and wound at the slightest touch. There is no known cure, and the only treatment is constant, painful bandaging of the skin."

Claudia has EB because both her parents carry a recessive gene, responsible for what has been described as "the worst disease you have never heard of".

"I was still knocking around the Liberties when I was in my 30s," says Liz. "Then I met Gary. We got engaged, married, and had Claudia within three years." She explains that following the birth at the Coombe Women and Infants University Hospital in January, 2004, some of the baby's skin was damaged, so she was taken to ICU.

The next day, a consultant dermatologist broke the news that there was a good chance that Claudia had EB.

"At the beginning, they spoon-feed you," she explains. "How else do you tell parents that their baby may have a problem that is going to affect every area of their lives?" The next step was a biopsy.

In the meantime, Claudia remained in ICU, while Liz went home. "I found myself in an empty house with an empty nursery and an empty cot. All the plans we had made were meaningless," she says.

Two weeks later, Claudia was transferred to Our Lady's Children's Hospital, Crumlin. From the outset, Liz was encouraged to avoid unnecessary skin-to-skin contact with her baby.

They soon learned that there were three main types of EB - simplex, junctional and dystrophic. Liz and Gary prayed that Claudia had EB simplex, the mildest form. Finally, when she was a month old, their baby was diagnosed with severe recessive dystrophic epidermolysis bullosa. Judith says this form of EB may cause internal linings to be affected, as well as a reduction in the flexibility of joints, and fusion of fingers and toes. "It's also complicated by the high risk of an aggressive form of skin cancer from early adulthood," Judith says.

Even though they were devastated, Liz and Gary took Claudia home immediately. "They offered to keep her in [hospital], to allow us to get used to the idea," says Liz, "but we needed to get some normality back into our lives."

And so began a way of being that the Scanlons could never have envisioned. Claudia had to be cradled in cotton wool and handled with kid gloves. "EB causes a breakdown in the natural proteins that hold the skin layers together. The slightest touch can cause severe pain, blistering and sores," Judith explains.

"There was a huge sense of loss," says Liz. "Gary and I had been a happy-go-lucky couple, and then this happened. It was the toughest time ever."

Fortunately, they were helped by their families - particularly Gary's mother, Carmel, who has fostered 36 children over time. There was also great support from the dynamic community in the Liberties. "This area is steeped in history," says Liz. "I'm still friends with girls I went to school with 45 years ago. We've been through it all together - Holy Communion, engagements, weddings, deaths, being 30, 40 and so on."

In the early days, Liz attended to all Claudia's needs herself. "She had wounds like I have never seen on anyone," she says. "The whole thing was just inhuman; I was a basket case. Eventually, I hit rock bottom and had no resources left to tap into."

All along, Liz had been fighting vigorously for EB nursing care. "I knew we were entitled to support, so I fought for it. The day it was approved was like winning the Lotto. A child should only get love and care from a mother. They shouldn't be inflicting pain on their own kids."

Now, three times a week, when her school day ends, Claudia is treated by an EB nurse in a specially designated room at home. The nurse lances blisters, attends to infected wounds, and finishes with a complicated bandaging process. This takes hours, and causes Claudia a lot of pain. But Liz says severe discomfort has always been a part of her daughter's life. "She was born with pain. She has chronic wounds all over her body, and is constantly plagued with infection. Her left hand has completely fused, and she is peg [tube] fed."

But, in spite of all the problems, Claudia continues to smile and, like most teenagers, finds pleasure in clothes, make-up, pop music and social media. And travel. Shopping in New York and going to Disneyland Paris are favourite activities for Claudia. When they travel, they take lots of bandages, lotions and creams.

Liz would move heaven and earth for her daughter. "Now is Claudia's time," she says. "She has been through so much. Apart from the pain, there is all the emotional stuff. Puberty is hard enough, without all this. She has to deal with really big stuff, like her own mortality, even though she's only 14 years old. So, we try to keep things in the here and now."

Liz says Claudia never ceases to amaze her. "Gary and I are completely in awe of her. I've never seen anyone fight that hard to do what they want to do. She's like a brave, brave warrior. The irony is, she is covered in bandages like a wounded soldier, but the only war she's been in is life itself."

This coming week, Liz will face a challenge of her own when she heads off to the Arctic Circle with 20 other women, who will endure six days of extreme weather conditions, to raise funds for Debra Ireland and to increase awareness about EB.

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