Jason is The Dystonia Collective's first support case. The entire reason of TDC coming to fruition, was out of our love and care for our mate Jase.
By looking at the entries below, you will get a sense of some of what Jason has been through after being diagnosed with Dystonia.
So since returning back to Australia from South Korea, I didn’t spare much time for myself ~ there's some others in the Dystonia community that I’ve met along the way, that are going through some very tough times..
A couple of those people, that I met throughout my dystonia awareness campaigns, were Sheryl & her daughter McKenzie Tamala.
Sheryl’s daughter is now 11 years old.
McKenzie, more affectionately known as ‘Kenz’, was diagnosed at a very young age with Generalized Dystonia (Generalized meaning full body). And for McKenzie’s particular case, she's one of only about 60 in the world to be diagnosed due to a very rare gene, GNA01.
And one of the youngest, and most severe cases in Australia.
McKenzie’s mother reached out to me in late 2017, and we’ve maintained contact since.
Once I’d landed home from Korea, I checked in with Sheryl & Kenz to see where they were up to and how they were holding up.
As usual for those trying to live with dystonia, things were still very bad for them, but also, Sheryl and McKenzie continue to display strength and resilience, to a condition that constantly chips away at these two qualities, daily and nightly.
For these pair it is non stop around the clock. It’s the definition of a real life living nightmare.
It’s heartbreaking what they face, and it's heartbreaking what they must deal with past and present, the pain and torture young McKenzie goes through is beyond what we can actually comprehend.
It really is a thousand times worse than what happened to me... And for those that are close to me, that really know how terrifying and horrific my situation has been, this is a very strong statement for what Sheryl & Kenz are going through...
Currently for McKenzie’s particular case, modern medicine is unable to help or cure her.
Something we only hope and work towards achieving one day.
For the moment though ~ they’re also finding themselves in strife in respect to daily and medical transport for McKenzie.
Kenz has finally out grown the disability van they’ve had for the past 10 years.
There is more detail on this if you click this link, but acquiring a larger van with disability modifications is extremely urgent for them, and absolutely necessary for their lives to function at a basic level not to mention for all the medical reasons, and McKenzie’s safety.
In a situation where they’re needing to raise over $50,000, I set upon undertaking a challenge to walk as many kilometers as I could through back trails and mountains, at high altitudes in the Andes of Peru, over 16 days, to try and help them gather funds needed.
I’m only sharing this as an update as to where I’m currently up to, and what I’ve been up to, in regards to my new found condition ~ I’m not the type to do charity work to then write about it to let all know ~ I much prefer to do the work and help someone and that be it, I don’t feel comfortable writing all about it to share after the fact..
But this webpage here is to open up on some of my story and where I’m up to currently...
So to share what I was able to do for this challenge I’d set for myself, I ended up walking 273 kilometres over the 16 days (minus 2 days for altitude sickness, and 1 more day from water poisoning - so 273KM in 13 days trekking..!).
In doing so, just over $13,400 dollars was raised for them.
A wonderful outcome. Not the $50,000 needed, but a much helpful injection of money to get further forward toward the purchase of this van.
Currently as I write this (November 2019) they are still struggling to get all the funds together (they’ve been trying to do so for a very long time now, all year, and at this stage looks to be into the next...), so at this point The Dystonia Collective is also focusing their full attention toward assisting Sheryl & McKenzie toward this goal as well.
A large part of the assistance (majority of it) comes from and relies on donations and your support ~ if you can find it in yourself to hit a donation button located all around this website, could you please do so to help us see the help that these two girls are in desperate need of.
Your support means so very much to us, and one that I personally know very well.
There’s a lot of gratitude flowing from here.
Thank you for reading, and thank you for any support you’re able to offer.
Lots of love, Jason.
Jason’s update, post South Korean treatments.
This will likely be the most welcoming update you’ll receive of this entire “ordeal”.. one that’s been the scariest ride of my life.
So it’s been a while since any updates here.. And for the past 11 months I’ve been undergoing full time treatment in South Korea. The costs, including everything prior to moving to Korea have exceeded $150,000.
I ran with the help of family and friends some other fundraisers and raffles, with a lot of help from friends in fact, and was even lucky enough to have friends also create a mini music festival, for two years running now ~ to help raise funds and togetherness, and just recently had a good mate organize a motorcycle ride day to help pay for my treatments too.
I’ve seen so much love and care for me, it’s been heartbreaking for everyone involved, but it’s also been inspiring and powerful.
And wow - where do I actually start with this update..? I guess if you’re here reading this you’ll have an idea of where all this started, so I’ll begin with where I’m up to today..
I’ve been back a matter of weeks from Korea.. and of course the question on lips right now is:
What was the outcome..??
Well the progress I’ve made and the recovery I’ve seen I’m sitting at over 90% improved..
Which for one word is miraculous.
But even that word, pales in summing it up..
I worked my butt off to see the results I’ve been so desperate and hopeful for..
Korea was a physical, mental, and emotional roller coaster for me.. some really mentally disturbed times for me, and bright ones too - but mostly it was just turning up day after day to continue the exercises and treatment process.
It’s been slow going - so slow it would be almost enough to deter some other Dystonia patients from attempting the process, considering that results aren’t guaranteed...
And though I’m not fully free of Dystonia, I count myself INCREDIBLY grateful to get to this point..
Time will be the biggest test from here..
But I plan to improve further through treatment specific exercises post Korea.
Though I have reached this point of recovery ~ and I am physically doing really well ~ just about everything that this has been to me has had a very deep emotional and mental impact. I’m still unsettled by certain aspects of it. There’s a level of trauma I try to acknowledge, something with time I’ll work at overcoming..
I’m honestly still just trying to wrap my head around all of it - I guess I never really have - even during the worst of this, to the better points of stability, and to where I’m standing today.
It’s a devastating condition, and a disturbing one that has never made any sense to me..
I’m currently trying to get my bearings being back in Australia, it’s been a bit wonky, after where I’ve come from and what’s happened.. in the process of piecing my life back together..
I was 33 when dystonia came into my life and I’m now 36. I of course feel robbed in ways - I did not need any of this - but I will be doing my absolute best to make up for it.. mentally I’m a little shaky, but I will get there.. And I STILL feel so fortunate that I seen such loving support. If you only knew how much darker my life was headed if I’d not seen support through friends and family. Things weren’t good, but the support really did make a difference - one that I really want to express how big of an impact it made on my world.
Things could’ve easily been so much darker than what they already were.. It might be difficult to understand from the other side of a fundraiser, but the process and experience from this side have also been a level of traumatizing ~ which may sound an overreach to some people ~ but added with what Dystonia was putting me through, I assure you it is not.
But as I said, continue forward, overcoming these things in time, I’ll keep pushing toward a full recovery, and the best out of life ~ as I was before..
I’m a very you can’t even imagine how grateful of a man right at this point for the condition I’m in & what life now looks like compared to what I was facing... but I bet you sure could come close..
Each morning my gratitude is strong.
The only other thing that would appear prominent from all of this - is also, how do I get western medicine to take notice and pay attention to Dr Lees method and TMJ therapy in South Korea..? Well, it’s no easy task, but in time, I hope to get it the attention it deserves...
All I can say to those that’ve supported is thank you - thank you for taking action for me. It’s all your love, caring messages and contributions, big and small, that make the actual difference... and helped me through this.
Thank you xoxo ✌
Jason's initial outreach to the public with this fundraiser/awareness campaign.
As many now know, Jason has been suddenly and unexpectedly diagnosed with Dystonia. This sort of impacting life event could easily make most of us just give up and resign ourselves to a life of pain. However, Jason is a ridiculously unique, resilient, positive person and is not taking this lying down. 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.
There's been an enormous amount of love and care and so many people asking how they can help. He did not want to start this page initially, because he is the sort of person that helps other people. If you're able, please take a moment to get an understanding of our campaign and what the hell Dystonia is...
You are watching a 33 year old Australian man who has been diagnosed with a neurological movement disorder in his cervical spine (the neck) - Cervical Dystonia (CD), a movement disorder that's third most common after Essential Tremor and Parkinson's disease that can effect ANYONE at ANY age.
Dystonia is an illness which causes sustained or repetitive muscle contractions, spasm movements or abnormal fixed postures, which can cause pain, tremors and other uncontrollable movements - It can affect any part of the body. The symptoms continue 24 hours a day. For Jason, he cannot 100% control his neck muscles from spasming and twisting his head and jaw to the right hand side. It's debilitating and has turned his life upside down in a very short period of time. He has gone from living a happy, healthy life, working 6 days a week, to being unable to work, and even struggling with the most basic of daily activities like eating.
Jason's most recent visit to his Neurologist has revealed that his CD is much more aggressive than what is typically seen among other patients.
Despite being the third most diagnosed neurological movement disorder, it's not a condition most of us are at all commonly aware of. People afflicted by it remain behind closed doors. Treatment is lacking and few research programs have been funded to help people suffering from the condition - the cause and cure of dystonia is still unknown at this stage.
What we are doing: Among his own struggles and the stigma of spasms, Jase has agreed to share his experience to bring much needed attention to this illness. He is helping researchers by signing up to clinical studies and is championing this campaign by reaching out to social forums to get the conversation started. This campaign is about raising awareness of an unsung illness, giving a voice to those who are suffering from it, bolstering support for researchers trying to find a solution, a cure, and to provide Jason with much needed treatment.
SO PLEASE - DONATE & SHARE SHARE SHARE!
Help us get it on the board: It’s not all about the money. Our target is to raise $100K for treatment and care not covered by the Australian health care system and to receive thousands of shares on facebook.
Finer details: Each case is profoundly different from the next and therefore requires specialized and often experimental treatment, which is not covered by the Australian health care system. The only effective way to find relief is to trial different therapies - available in limited places within Australia and overseas. Estimated costs exceed our target.
By helping Jase, you’ll be helping thousands of others who are also in dire need of more effective treatment.
Jase: "I've always been focused on getting the most out of life but this has twisted and shaken it all to a pretty scary place. Right now I want to do everything I can to help myself and others."
For More info on the GoFundMe page please CLICK HERE
Next big step is getting him over to South Korea asap!