Fun weekend for 'butterfly' kids
Twins Lesliegh and Alannah Hori were born with skin as fragile as butterfly wings.
It tears with the slightest scrape, and blisters when rubbed. Even wearing clothes can be painful, as rough seams grate their skin.
The 10-year-old Porirua girls have a rare genetic condition called epidermolysis bullosa, which is caused by a mutation in one of the genes that make skin protein.
The twins' mum, Cathy Maher, also has it, but says there is more understanding now compared with when she was a girl.
"We were like guinea pigs, they would tear strips off us and test it. Back in the primitive days, there wasn't much support like there is now."
The blisters and open wounds feel and heal like burns. The twins wear clothes from the neck down, both to cover scars and as a layer of protection.
Walking or running long distances is out, but they can play sports if they are prepared to go through the pain and bandaging. Lesliegh plays soccer and Alannah is a cricketer.
"You get lots of goals and you get dirty, but the downside is you get hurt," Lesliegh said.
There is no cure and they rely on pain relief, sterile bandaging and lancing blisters, including ones that form in their mouths and throats, Ms Maher said.
This weekend, at Wellington Zoo, the twins will join other New Zealand families living with the condition.
"It's one time that they are around kids just like them, and they don't have to worry about people pointing and staring at them," Ms Maher said. "It's nice to be normal."
The family camp and conference at the zoo was organised by EB support group Debra. A group spokeswoman, Lea Prujean, said parents would hear from international medical experts about the best care and treatments, nutrition, and the latest research towards a cure.
There will also be a session for the children on how they feel about being different, and learning ways to cope with being teased or bullied at school.
"There can be few conditions that are as painful and simply awful to live with," she said.
"The closest thing to imagine would be if you perpetually had third-degree burns over most of your body."
Some sufferers spend three hours a day applying bandages to damaged skin.
More than 150 New Zealanders have mild to moderate EB and 11 people suffer from it severely.
Singer and entertainer Jane Keller will perform a fundraising show for Debra on Monday night at Circa Theatre.
- © Fairfax NZ News
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