Most parents have great aspirations for their children as they look into the distant future, but some parents hope that a kiss on the cheek won’t strip skin from a tiny face or that a hug won’t produce blisters that take many hours to dress.
Epidermolysis Bullosa (EB) is a rare disease where the skin blisters and peels at the slightest touch. EB is very painful, and sufferers must be bandaged every day with dressings to protect and medicate their wounds.
When Bangalow couple Nina and Matt were told their newborn bundle Lola had EB three years ago, the shock soon gave way to hour upon hour of dressing the infants little body from top to bottom, her skin as fragile as a butterfly’s wings.
EB effects every part of Lola’s life from from choosing clothes that won’t rub her, educating anyone who interacts with her on how to reduce the risk of using pressure on any part of her body, to Lola’s own potty training: any friction can cause the loss of skin, even natural bodily functions.
A year before Lola was born, Adelaide business man Andrew Biszczak met Kate Turner who was raising awareness for (EB) and fundraising for Butterfly Children like Lola around Australia.
Sadly in 2015 at just 26 years old Kate Turner passed away from complications from the illness but the fire she grew in Andrew’s belly continued to burn and he formulated a plan to raise awareness and $1,000,000.
Andrew says that it takes a lot of money to get research happening. ‘The Million Dollar Run is a 3,000 kilometre run,’ says Andrew. ‘The aim is to run approximately 40 to 50 ks a day to raise a minimum of one million dollars for The Butterfly Children around the country.
Andrew sold his house and packed up his family and clocking up the ks, he left Victor Harbor in SA on April 2 and plans to hit Brisbane this Friday in The Million Dollar Run.
Andrew says it is the families who had to dig in and do all the work with the kids. ‘The families – they are amazing. Considering what they have to go through each day: Amazing’.
Andrew met Lola last on his passage through the Byron Shire recently where the two had morning tea and discussed the virtues of pink over purple.
‘I have met the most courageous people in the EB community,’ he says. ‘They are just unbelievable. They just get on with things, they don’t complain about anything and the look for answers, they look for a positive outcome. They are remarkable.’
To find out more about EB and the Butterfly Children, visit: www.themilliondollarrun.com.au.