The West

Aussies help soothe stricken boy
Komang, who suffers from an extremely rare skin condition, with his father Wayan. Picture: Lee Griffith, The West Australian

Four hours from the chaos of Kuta, up a steep hill, past the chickens, the tied-up bull and the villagers who gather to see the rare visitors, a small four-year-old boy looks up from the toy truck he pushes with his twisted, malformed arms.

His eyes are glassy, his eyelids can't close and his skin is covered in what looks like scales.

According to all medical odds, the little Balinese boy should not be alive.

The rare genetic condition that renders his skin cracked and hardened - known as harlequin ichthyosis - typically kills babies just after birth and Komang's survival is nothing short of a miracle.

"When he was born, his skin looked like this . . . like plastic," his father Wayan Muderawan said.

Until just two months ago, Komang remained undiagnosed and out of sight, surviving each day the same way he has since birth - in constant pain and barely able to move.

Then he came to the attention of Australian charity worker Helen Flavel. She forwarded photos of his skin to a dietitian who diagnosed the condition from photographs.

There is no cure. But for the past two months, Komang's condition has eased and - in the long term - he will ultimately be kept alive by the simplest of things: jars of Vaseline brought to the holiday island by tourists and left at a bar in Kuta. The Vaseline, which is nearly impossible to source in Indonesia, is applied to his skin twice daily.

As word has spread a growing stream of Perth tourists drop off jars of Vaseline at a collection point set up at The Bamboo Bar and Grill in Kuta.

"I saw pictures of him and just wanted to help him," Gaynor Richardson, from Currambine, said.

She wipes back tears. "He is amazing, absolutely amazing," she said. "Just a little chap that just needs help . . . that is so happy and contented."

Cradling his son in his arms, Wayan said the change in the past few weeks has been miraculous. "Komang's ears are coming up and the eyelashes and eyebrows are growing," he said.

"And now he can eat by himself using a spoon. Before he couldn't do that. He is a cheerful boy. He loves to play."

The West Australian

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