Banyo champion walks Bridge to Brisbane for rare skin disease
Nine-year-old Johanna Cleaver suffers unimaginable pain but when she walks the Bridge to Brisbane this Sunday the only thing on her mind will be raising awareness of her rare skin condition
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On Sunday nine-year-old Banyo champion Johanna Cleaver will put on a big smile and her walking shoes to tackle the Bridge to Brisbane but what most people won’t see is her incredible courage.
Suffering the rare disease Epidermolysis Bullosa (EB), where the skin blisters and peels at the slightest touch, just walking in shoes is a challenge.
Last year, as Johanna walked her first Bridge to Brisbane in the pouring rain, her boots filling with water, she suffered blistering that took more than two weeks to heal.
But pain is not something that will stop her brave spirit.
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Johanna and seven of her closest friends will put on their walking boots to shine a light on EB and raise money for research and the volunteer charity support group DEBRA.
From people wondering if they can catch the disease from her, to tackling questions about why she is often covered in blisters that look like third-degree burns, Johanna has a strength and courage beyond her years.
“I have delicate skin,” Johanna says.
So delicate that someone brushing by hurriedly in the shops can cause her skin to tear or an accidental catch of a shoe on her heel will tear away layers leaving open wounds.
“Someone told me to tell people giant rabbits attack me,” she says giggling.
“But I love rabbits. I would probably more say it was giant spiders.”
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Affecting all three layers of skin and internal mucosal linings, DEBRA (the volunteer-based organisation providing help for those with the blistering disease) likens it to “living with third-degree burns”.
A fall recently while playing with friends resulted in the skin tearing from Johanna’s hip, playing tennis was done with gloves and playing the violin results in blisters.
“But everyone gets blisters playing the violin,” Johanna says.
“It’s more when people rush past and don’t really see me.”
The brushing past, Johanna says — even though she doesn’t feel her skin tear — is something she hopes to make people more aware of for EB sufferers.
“Sometimes I don’t feel the bumps, sometimes I do, but then there is a blister and I wonder where did I get that,” she said.
“Sometimes I still cry in bed that I have EB and I don’t feel very nice about it but I do try to keep calm about it.”
She said having the support of DEBRA and her friends at school, who “stick around me trying to help” when she hurts herself had made living with EB easier.
From blisters inside her mouth to large wounds on her knees and tiny blisters on her hands, everyday things are a challenge.
“A week ago I tried to do the monkey bars but I had to let go,” she said.
She’s taking part in the Bridge to Brisbane even though she knows there will be blisters at the end.
“I don’t know (how I do it) I just try my hardest,” she said.
Support Johanna at everydayhero walk for DEBRA
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