A Balgownie boy whose skin is as fragile as a butterfly’s wing will meet his hero on Thursday afternoon.
Three-year-old Ky North was born with a rare genetic disorder called Epidermolysis Bullosa (EB) which causes his skin to blister and peel at the slightest touch.
The painful, incurable disease has caught the attention of a South Australian man who’s running 3000 kilometres from Adelaide to Brisbane to raise awareness, and funding.
Andrew Biszczak sold his family home and business to fund The Million Dollar Run which will reach North Wollongong on Thursday.
Ky, and his parents Melissa and Jeff, are encouraging community members to meet up with them at Stuart Park at 4pm and take part in a five kilometre run – and donate $30 to the cause.
‘’Ky has the simplex form of the disease which affects the top layer of his skin – basically he’s missing a gene that helps bind all his skin together,’’ Mrs North said.
‘’There are more severe forms that affect the deeper layers of the skin and soft tissues inside the body – and can be fatal.’’
Ky’s condition could not be detected in any pre-natal scan, but was apparent at birth with the skin on his hands and feet red raw and peeling. His condition has improved slightly, but painful blisters on his body limit what he can do.
‘’It causes his skin to be very fragile to the slightest touch, heat or friction,’’ Mrs North said. ‘’He has anything from 10 to 50 blisters at any one time – ranging in size from a small pinky nail to a 20cm coin.
‘’We treat the blisters and wounds daily, and apply soft bandages where needed. But he can’t walk around as much as he should because of the blisters on his feet, and he can’t play and explore like most kids his age.’’
The Norths are supporting Mr Biszczak, who started his mission after meeting sufferer Kate Turner, an ambassador for the DEBRA Australia which supports the so-called ‘butterfly children’.
After Ms Turner’s death, Mr Biszczak swore to raise $1 million for DEBRA to help support sufferers and fund research. Details at www.themilliondollarrun.com.au
‘’Sufferers live their entire lives in constant, unimaginable pain,’’ Mr Biszczak said. ‘’There is no cure as yet and with only around 1000 sufferers in Australia, there is also no direct government funding either.’’