Bali Boy

Reporter Graeme Butler

Helen Flavel who has done humanitarian work in Bali for years put out a call for help. The request was a simple one; please bring a tub of Vaseline if you travel to Bali. Komang has a rare genetic condition called Harlequin Ichthyosis which causes his skin to dry and crack giving the appearance of scales -

"There are only 100 people living in the world with this condition"

Since Today Tonight's story - 8 months ago thousands of people took up the call and donated Vaseline - this is just one of storage sites - it's Bali Kids Orphanage which is one of the organisations helping Komang. "So this is some of the Vaseline that's come from Australia? Yes most of it has come from Australia got some 8000 jars here and its packed solid back to the wall. That goes back almost a metre it's huge yes and on the other side different brands petroleum jelly."

To see firsthand what a difference the donated Vaseline has made to Komang we've headed to his tiny village hidden in the Balinese mountains - it's a long trip by road about 4 hours north from the tourist hub of Kuta we keep driving until we can go no further.

This is where the road finishes from here we've got to hike to the top of the mountain and it's pretty rough, not surprisingly this is a place that tourists to Bali just never get to yet despite that, thousands of Australians have left an indelible mark on the tiny village at the top of the mountain.

It's an uphill track made all the more difficult by the humid conditions, it's little wonder Komang went un-noticed up here for 3 years - he was discovered by a care worker who called on a group of Australian's to take up his cause, one of them has returned with us what we find when we arrive is truly amazing.

Komang is like a new boy - the agony on his face is gone and has been replaced with a smile. The angry skin condition, while never likely to be cured, has been tamed, for those who donated tubs of Vaseline - this is the difference you've made.

Brian Grant has visited Komang regularly - he says the transformation he's seen is extraordinary. "When we first met him he was just a bundle of gristle and now as you can probably see he's able to walk, his hands are hands they're not bundles of gristle his skin is better his eyes he can actually sleep with his eyes shut whereas before he had to sleep with his eyes open and he's got hair coming back"

Komang is now happy to see visitors arrive - Brian has brought photographs of people Komang is familiar with - it's a treat that competes only with his time now riding his bike, a year ago all of this was impossible to imagine for Komang's parents. "We are so happy to see Komang now he is much better that before we are proud with Komang and we just want to say very thank you for helping and happy to see Komang now"

Keeping Komang's skin clean and free of infection involves regular baths with QV wash - following the bath and up to four times a day the Vaseline is rubbed all over his little body. It's not a cure, there isn't one but this protects and soothes the cracked skin.

The condition which inflicts Komang has been discovered in five other children living near-by. It's believed the genetic condition could be the result of the small gene pool in the area; medical staff make regular visits to the village to check the children. Today braving a thundery down-pour to hold a make-shift clinic - the facilities are basic at best - but the care is invaluable and for Komang it's given him a shot at living a life.

 

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