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Boy, 13, with ultra-rare bone disease that will turn him into a 'living statue' is taken on a ride in his favourite 1960s Kombi van ahead of radical treatment

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Friday, March 22, 2019

BRISBANE, Australia - A young car enthusiast stricken with a rare bone disorder has been taken on the ride of his life as he prepares to undergo the next phase of a revolutionary drug trial.

Sydney teenager Zach Armstrong, 13, couldn't believe his eyes when a 1960s Kombi recently turned up in his driveway to take him on a drive ahead of one of his frequent flights to Brisbane for treatment and tests.

CareFlight went the extra mile to organise the special surprise with Klassic Kombiz to make Zach's latest trip up north less daunting.

Zach, 13, has fibrodysplasia ossificans progressiva, a rare genetic disorder, which has no cure or approved treatment.

Also known as stone man syndrome, the rare disorder causes Zach's ligaments and muscle tissue to turn into bone, progressively paralysing his body.

It's estimated the disorder affects just 3,500 people worldwide, or one in two million.

Most patients are bedridden by the age of 20 and have a life expectancy of 40 years.

There is no known cure for the disease, which effectively turns humans into 'living statues'.

Zach love of cars began when he saw the Herbie movies when he was two, the same age he was diagnosed.

'His face lit up when he saw the 1960s Kombi in our driveway on our most recent trip in January,' mum Laurin Dean said.

'He's addicted to Volkswagens, he knows them all.'

Zach has previously been surprised with stretch hummers, a fire truck, military trucks and even a police escort to take his mind off the never ending stream of tests and appointments at Brisbane's Lady Cilento Children's Hospital.

'We picked up Zach little over six months ago from the airport and brought him back to his house this is such a great thing that it can be done for kids like Zach it's great to see such big smiles on their faces great work everyone,' a Regentville Rural Fire Service volunteer posted on Facebook.

CareFlight's Brendon Vagg is one of the many people involved in Zach's transportation to Brisbane, which has resulted in a close bond between the pair.

'After the first transfer he was very reluctant to go because the barrage of tests so the CareFlight team started coming up with different ways of trying to make the experience better for him,' Mr Vagg said.

'The way I look at it is, it's the better part of the job. Making his life a little happier, it makes me happier.'

While Zach's frequent 1000 kilometre trips up to Brisbane are far from over, his mother remains hopeful for the future.

'Last year we got approval for a drug trial here in Australia and we're now in phase three, which is a real positive sign,' Ms Armstrong said.

'He'll be on the drug trial for two years, which requires us to travel twice a year to Brisbane.'

Author: Kylie Stevens
Source: The Daily Mail
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4.0 from 1 vote
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