Real Life

‘My amazing butterfly kids’

Born with a disease that causes blisters all over their bodies, Taranaki’s Vivian Brooke and her children are battling the skin they’re in.

Every day, Vivian Brooke takes a couple of hypodermic needles from their sterile packets and calls her children over to sit next to her on the sofa. As her children wince and cry in pain, she uses the needles to carefully pop the blisters that have formed on their hands, feet, necks and faces.

Damian (9) and Samantha (8) have a rare disorder called epidermolysis bullosa (EB), which leaves their skin blistered. Children with the disease are often called “butterfly kids” because their skin is as delicate as a butterfly’s wing. They can get blisters just from rubbing their faces against their pillows, or from the collars of their clothes touching their necks.

Having their blisters popped to prevent them growing too big and causing more of a problem is as much a part of Damian and Samantha’s daily routine as cleaning their teeth, but it’s not a pleasant experience for anyone.

It breaks Vivian’s heart to cause her kids pain but she knows only too well that it has to be done. She understands how much it hurts because she too has EB.

“It’s not a nice thing, inflicting pain on your kids every day,” says the Taranaki farmer. “What’s really hard for me is that I have given this condition to my children.”

Vivian knew she had a 50/50 chance of passing on EB to any children she had, but hoped for the best. When both kids were born with it, she was devastated. But she doesn’t want anyone to feel sorry for her or her children. They have all learned to live with the disorder and accept that it’s just the way things are.

What Vivian would like is for people to be more understanding. “The thing I find hardest is when people stare. I hate it. I’ve also heard some horrible comments, which are really upsetting. I’ve had people think I’ve burned my kids and once, when Damian was a very small baby and his arm and leg were wrapped, I had a woman accuse me of beating him.”

Vivian tells the children to ignore people who stare at them. “I always say that if people are staring, then they are the ones with the problem, not us.”

Luckily, Damian and Samantha don’t seem to worry about the way EB makes them look. “Samantha has been a bit upset lately about some unkind comments made by kids at school but generally everyone around here is good. The kids have never asked why they’ve got this problem with their skin. They just think it’s normal. “In fact, when they were little, they used to think their dad wasn’t normal because he hasn’t got it.”

EB is genetic but the genes can lie hidden for generations. Vivian doesn’t know of anyone else in her family who has it, and when she was a child, so little was known about the condition she wasn’t diagnosed until age four.

However, it was evident from the moment she was born that something was wrong with her skin. “I was raw when I arrived,” she says.

As a child, her skin was always “a mess” and she couldn’t wear shoes because they would rub and her feet would be covered in blisters. Today, her feet are still her main problem and admits she should stay off them more often to prevent blistering.

“But it’s hard when you’re farming. You’ve just got to keep going.”

When Vivian and her husband Philip first discussed having children, they knew there was a chance their babies could have EB. But there was just as much chance they wouldn’t have it, and because nobody else in the family had the condition, they decided to take the risk.

“We could have had a test while Viv was pregnant that would have showed if the baby had EB but we decided not to do it,” says Philip. “It wouldn’t have changed our minds about having the baby.”

Vivian had Caesareans with both children so their skin wouldn’t be rubbed raw during delivery. When she first saw Damian, she checked him all over for signs of EB and was relieved that he didn’t have a mark on him.

“But when he was three days old, I noticed his toes were blistered where they’d been against the sheet and I thought, `oh no.'”

When Samantha was born just over a year later, Vivian and Philip were again hopeful the baby would be spared. “But we knew straight away. Her fingers were blistered where she’d been sucking them in the womb.”

The couple say they have never regretted having the children and have always just “got on with it and coped”.

Infections are their main worry – if the skin gets infected it is incredibly painful and can take a long time to heal. The children tend to end up with infections every couple of weeks. The pain is constant and to help them deal with it, Damian and Samantha are given a painkiller every lunchtime at school. Sometimes their feet have been so sore, they have had to resort to crawling.

Unlike some other people with EB, whose skin needs to be bandaged to protect it, Vivian and her children usually steer clear of bandages because the heat they generate makes their particular kind of EB worse.

EB affects nearly every aspect of their lives. For example, during a trip to Melbourne several years ago, the children were in pain because the skin on their backs and bottoms had blistered from sitting in aeroplane seats for three hours at a stretch.

But Vivian and Philip are determined not to let EB stop them or the children doing anything. “We don’t want them to use it as an excuse not to do things,” says Philip. “EB slows them down but it doesn’t stop them – they will try most things.”

Samantha, for example, took part in the school cross-country a while ago. “Her feet were a mess afterwards, but she did it,” smiles Vivian. “And she came fifth.”

Vivian’s admiration for her kids is obvious. “I know what it is like living with this – it’s horrible. But they just get on with it. They’ve been through so much and I’m really proud of them. They are amazing kids.” Donna Fleming

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