Papua New Guinea boy’s journey to Australia to cure rare bone disorder

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Edward Kennedy uses crutches, swaggering from one leg to the next, as he walks into St Vincent’s Private Hospital physiotherapy room in Melbourne for his second session since surgery to correct a rare bone disorder.

He has spondyloepiphyseal dysplasia, more commonly known as dwarfism, which has caused deformities in his knees and forced him to walk with a wobble.

“As he grew his deformities would have become worse and it would have found it almost impossible for him to walk,” his orthopaedic surgeon Leo Donnan says.

PHOTO: Edward was one of the first children identified by No Roads who needed greater assistance. (Supplied: No Roads – Health)

After hearing about the PNG’s stretched health system and facilities, a trekking company organised trips along the Kokoda Trail with Australian clinicians.

A team of about 10 people, about four times a year, treat locals over eight days across the Pacific nation, for a range of illnesses such as malaria and tuberculosis, and musculoskeletal conditions.

“We have three golden rules we have when we go over there, and the first golden rule is that we teach and mentor and coach at every opportunity so what we are trying to do is increase the capacity on the ground,” No Roads – Health program manager Stewart Kreltszheim says.

“The second one is that we work with the medications the people on the ground have, so we are not coming in with short-term solutions.

“And the third is that we treat under the regulations of the country we work in.”

They met Edward in 2014 in the remote village of Buna in Papua New Guinea’s Oro province.

The doctors raised the urgency of his condition, so the organisation teamed up with Children First Foundation to bring him and a group of other children from PNG to Australia for surgery.

“The only tertiary hospital in Papua New Guinea in a country of seven million people is in Port Moresby and it has no paediatric orthopaedic capacity to the extent that Edward needed,” Mr Kreltszheim says.

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