Little Ky North’s skin is so fragile that he has to wear his clothes inside out so the seams don’t rub, he needs special linings in his nappies and he can only play with the softest toys.
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The eight-month-old Balgownie boy suffers from a rare genetic disorder called Epidermolysis Bullosa (EB) which causes his skin to blister and peel at the slightest touch.
It’s a painful condition and parents Melissa and Jeff have to drain his blisters, dress his wounds and bandage his little body on a regular basis.
‘‘We try not to think about the future - and how he will cope at school and as he becomes more active.''
They spoke to the Mercury about Ky’s condition during EB Awareness Week, which raises much-needed funds for DEBRA (Dystrophic Epidermolysis Bullosa Research Association) Australia.
‘‘Sufferers of EB are missing a protein that binds the skin together,’’ Mrs North said.
‘‘So their skin is very fragile and any friction or heat causes blisters or wounds.
‘‘There’s different levels and Ky suffers from a milder form that only affects the top layer of his skin - in more severe forms the deeper layers of the skin are affected.’’
EB is not always evident at birth but in Ky’s case, his raw, red feet and hands quickly alerted nursing staff at Figtree Private Hospital.
He was quickly transferred to Sydney Children’s Hospital where he remained for two weeks.
‘‘He was seen to by a team of dermatologists who ran tests, treated him and taught us how to change his dressings,’’ Mrs North said.
‘‘Now we have to check him daily for blisters and pop them with sterile needles, drain them and apply dressings or cornflour to dry them out.
‘‘It’s getting harder as he starts moving around more, and when he starts crawling or walking there’ll be more friction on his knees and feet.
‘‘We try not to think about the future - and how he will cope at school and as he becomes more active - we try to just concentrate on how he is now.’’
Still, Mrs North admits it can be tough knowing that their little boy will not be able to take part in the rough and tumble other kids enjoy.
‘‘It’s hard to see what other babies his age can do and he does look different so a lot of people ask us whether he’s been burnt or has eczema,’’ she said.
‘‘We have to be careful with his clothing - often turning it inside out so the seams don’t rub his skin - and we line his nappy with soft material.
‘‘Most days he’s good but it can be quite painful for him.’’
Mrs North said DEBRA Australia provided great support for EB sufferers and their families, and funded research to find a cure.