Meet Jason Lynch.
For 33 years the charismatic man from Darwin in Australia’s Top End enjoyed a physical lifestyle, backpacking around the world and enjoying the great outdoors.
This all stopped suddenly when he was diagnosed with dystonia.
A debilitating illness which he had never heard of until the day his neck started lurching sideways in painful spasms he had no way of controlling.
Jason Lynch, 33, enjoyed a physical lifestyle before being struck down by dystonia
The illness is a neurological disorder that causes muscles to contract or spasm involuntarily
Since that day the once energetic traveler has had to give up many of his great loves, kayaking, hiking, exploring.
The physical toll on his mind and body has prompted him to raise awareness for the disease which has dramatically reshaped his life.
He has done that with a confronting video.
The video shows the 33-year-old’s head jerking violently to the right.
A physiotherapist’s voice can be heard behind the camera as the young man stands head twitching, following her instructions.
The imagery is powerful but it is the subtitles, written in Jason’s own words, which show the heartache evident in his story,
‘My name is Jason, and this is dystonia,’ the captions read through involuntary head movements.
Jason has shared a confronting video with the hope of raising awareness of the illness
The heartrbreaking video shows Jason struggling with everyday activities because of his illness
‘I’d never heard of it, my life and body were normal and healthy only a month ago.
‘It’s relentless and debilitating at its worst.
‘I am only 33 years old, now faced with a movement disorder. There’s no cure’.
The heartbreaking video was posted on June 6, 2017.
‘I don’t want my reality to be pictures of memories, but most of all I just want the Dystonia to stop,’ he said.
After the video flicks through his treasured memories it opens on another confronting scene.
A Go Fund Me page has been set up for Jason to raise money for his treatment and care
Jason can be seen struggling with his dystonia while trying to eat a bowl of cereal at the table.
He appears to get frustrated as he tries to stop the involuntary jerks with his hand and shoulder before giving in and putting his spoon down.
Dystonia is a neurological disorder that causes muscles to contract or spasm involuntarily.
A Go Fund Me page has been set up for Jason to raise money for treatment and care not covered by the Australian health system.
Lucy Arnott, who set up the page, wrote Jason’s condition requires ‘specialised and often experimental treatment’.
‘Jason is a ridiculously unique, resilient, positive person and is not taking this lying down.
Jason requires specialised and ‘often experimental treatment’ costing in excess of $100,000
‘He would probably hate this being said, but it is genuinely inspiring to watch the way he’s dealing with what he’s up against.’
As part of Jason’s treatment international trips are being planned, inlcuding visits to the United States, Canada and South Korea to see specialists.
The cost of those trips is expected to be more than $50,000.
Jason himself posted an update on the page saying watching the videos of him struggling with his illness was ‘gut-wrenching’.
Jason said the fundraising effort was also about generating awareness and to help other sufferers
‘There’s a huge amount of anxiety and regretfulness with putting myself out here, and going ahead with this.’
He said the fundraising effort was as much about generating awareness for dystonia and to help other sufferers.
So far the page has raised more than $21,000 of a $100,000 goal.