Until their granddaughter Lola was born, Toowoomba grandmothers, Lizzie Carr and Anne Howard had never heard of the rare skin disease, Epidermolysis Bullosa (EB). Precious little Lola lives with this rare condition, which has been likened to having third-degree burns. Children suffering from EB are said to have skin as sensitive as a butterfly’s wings, and that is how they get the name ‘Butterfly Children’.
Lizzie said they were first alerted to a problem with Lola’s skin following her skin prick test in hospital. “Her skin just blistered,” she said. “Not even the doctors and paediatrician could diagnose what was wrong initially. Matt (my son) and Nina suddenly had a baby with a disease they had never heard of.”
Now the ladies are experts in EB. They can name the different strains of the condition, name the leading researchers around the world and understand the current and future challenges their granddaughter faces. “EB makes the skin as fragile as wet tissue paper – the slightest knock or rub or rolling over in bed or a hug can cause blistering,” she said. “They just get blisters on blisters on blisters on blisters which need to be burst all the time.”
Lola is now 14 months old and requires two full time carers – her parents. “Nina and Matt put dressings on Lola everyday to protect and medicate her wounds – it’s an hour of agony for them everyday,” said Anne. “I can’t see her walking for a long time, because she can’t stand to put her feet down, so her milestones are delayed.”
Lizzie and Anne are now taking fundraising for the rare condition into their own hands. They are currently putting the finishing touches on Runway Fashions, a luncheon event designed to raise awareness and funds towards supporting Lola and 1000 other children across Australia who live with the condition. The grandmothers, in conjunction with Debra Foundation, the Australian not-for-profit organisation for EB, have set a target to raise $20,000.
“DEBRA Australia receives no government funding and relies on donations and fund-raising for the incredible work they do. Given this we hope to raise as much money as we can,” said Anne.
The charity day will be held at the new Wagner’s airport, and the main event will be a fashion parade by renowned fashion designer Liz Davenport. This promises to be a fabulous show as Liz specialises in designing stylish clothes for travelling women. Local businessman Bernie Freyling from Helloworld Toowoomba has generously donated two return flights to New Zealand for the raffle, valued at $4500. This major travel prize also includes a week of accommodation in the south island of New Zealand. Lizzie and Anne will be selling raffle tickets at locations around Toowoomba prior to the event as well as on the day.
Runway Fashions is to be held at the Wellcamp Airport on Tuesday 17 November from 11.30am. Tickets cost $85 and can be purchased HERE.
Words by Kirk W Wallace | Image via Liz Davenport