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Don't Let Me Die Alone

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My name is Troy Thornton. I'm 54 years old & I'm dying from multiple system atrophy.

I have a date to die in Switzerland on 22 February 2019.

I'm married to my beautiful Christine and we have 2 wonderful kids, Jack (16) and Laura (13).

We live in Melbourne on the Mornington Peninsula.

Until my forced early retirement last year I was Operations Officer/Officer in Charge at the Mornington Fire Brigade.

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My 30 year professional life has been in emergency fire and rescue, initially as a pararescue jumper, helicopter aircrewman & co-pilot for the National Safety Council of Australia in the late 1980's, and then from 1989-2018 as a firefighter in the CFA Fire brigade.

The 1997 Thredbo landslide disaster was one of my more memorable rescue jobs for sure.

Outside of work, I have led a very active life, not only jumping out of planes and such, but in sport too.

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I played 1st grade amateur footy for Frankston in the early '90s, I  have had the good fortune of having surfed great surf breaks throughout Australia and in Hawaii and Bali, and skied the snow resorts around Lake Tahoe in the USA.

I always figured I'd be around to enjoy sport and other activities with my kids well into their adulthood, but fate has determined otherwise and that's why I'm on this site now.

A summary of my story:

Every good aspect of  the life I was living has slowly excruciatingly been taken away from me since my diagnosis in july 2014 ... my walking, running, being able to play or kick a footy with my kids, my speech, my career, my independence etc.

When I got my diagnosis, I didn't want to sit back and let the disease take its course. I didn't want my kids or wife Chris to remember me stripped bare: without dignity, without control over my body, a paralyzed shell of the man I once was.

So when I got the green light from Dignitas in Switzerland to 'assist me to die', I thought at least I had an option/exit strategy that was legal, medically sanctioned & supervised , peaceful, and less traumatic for me & my family and friends.

And I thought that this would be easy enough to arrange.

How wrong I was!

Not only did it prove very difficult for me to get the many reports and official documents that Dignitas required, when I delayed my 'assisted dying' day by a couple of months to see my kids 14th and 17th birthdays, Dignitas advised me that the original neurological report I gave them was now too old and I would need to have it updated for them.

When I asked my neurologist for an update, his response was 'sorry mate, but I won't give you anymore documentation that links me to helping you with your intentions in going to Switzerland' , and then when I told Dignitas they said 'get an updated medical report from another neurologist.'

So I asked my GP for a new referral and yes I did get an updated medical report from a different neurologist, but when I sent this to Dignitas, they told me they could not proceed unless I provided them a more detailed report. 

Despite my telling them numerous times how difficult it was for me to get them further medical report updates, it seemed to me that Dignitas weren't being very empathetic to the difficulties I was having.

And given my deteriorating physical and mental condition ..... I was surprised and disappointed that Dignitas seemed to have no regard for how damn hard it has been for me to get any reports at all? 

This didn't seem right to me, so I reached out to 'Exit International' and Dr Philip Nitschke to see if they could help me.

Dr Philip was surprised,and he said he would speak with Dignitas to try to 'workout a solution', but after he too got the thumbs down from Dignitas, he suggested I go to Life Circle / Eternal Spirit in Basel as they were wonderful helping with 104 year old David Goodall last May.

And so when the good folk at Life Circle said "yes, no problem. We'll sort the neurology report out for you", I was overjoyed with relief. I had my escape plan at last. I could finally get on with planning my last ever Christmas - gulp - with Chris and the kids.

But this is where things really got appalling and disappointing!

When I requested Dignitas refund the deposit money I had already paid them CHF $4000 (=over $5500 Aussie dollars) less 20% for their preliminary preparation work on my case (as per what they state on their initial deposit invoice), ..... they told me that I had 'misunderstood' their refund policy statement and that they would not refund me any part of my initial payment.

Dignitas would be keeping my CHF$4000/AUS$5500 initial deposit payment!

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UNREASONABLE/DISGRACEFUL DIGNITAS!

Even when I wrote Dignitas to explain that without them refunding my money my wife Chris would most likely not be able to come Switzerland to be with me, they still said no to my refund request..

I'm so appalled and disappointed, Dignitas have really shown me their  'true colours' which I believe others should know ..... that Dignitas are in fact not the 'human right to choose to die' crusader and the compassionate 'assisted dying' service that they make themselves out to  be ....

Instead, people should know that on the contrary I have found Dignitas to be more about taking advantage of the sick and vulnerable in order to make money! SHAMEFUL!

And so here I am. I have a date with Life Circle and at this stage without my refund from Dignitas if I can't raise the funds it looks like I will be going to Switzerland on my own.

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I have now reached a stage where my condition has caused severe impairment of my speech, writing, walking, coordinated movement, bladder control, and vision which is obvious to all. And what’s worse and what people are unable to see is that I am also having to endure and suffer relentless fogginess, in-balance, vertigo, nausea, and I feel generally unwell every conscious moment of every day.

I am now mostly housebound, unable to work, it is increasingly difficult for me to function independently and interact in what I consider any meaningful way with my family and friends, AND THIS HAS BECOME UNBEARABLE TO ME.

This is why I looked to Dignitas to help me to check out on my terms.

So now to have Dignitas rob me of any refund - yes I call it theft - it's just so disgraceful and so disappointing! and so I think Dignitas should be called out for it, and this is my attempt to do so.

Since having looked to Life Circle in Basel as an alternative, I would now recommend people look to them before Dignitas anyday.

LIFECIRCLE and all my friends are urging me not to go to Switzerland to die alone, and I would prefer not to go by myself.

Having my wife Chris by my side, holding my hand is my final wish.

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SO PLEASE I would be incredibly grateful if you can help this come true.

Yours,

Troy Thornton
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On the eve of leaving for my death on the other side of the world I'd like to do the following:

RECOMMENDED ACTION

I request the Victorian Parliament pass an amended version of the 'Euthanasia' Bill so that it also becomes legal for people who are in my situation with a "not necessarily" terminal illness (and able or not and with or without financial means) to have a legal assisted suicide AS option in Australia that they can choose to end their life on their own terms in their own home country if they feel they are suffering an unbearable quality of life and they are sound of mind.

PROPOSED COST/BENEFITS

I would contend that for people in my situation the passing of a new amended law will:

• minimise suffering & allow them to choose to end their own life with dignity, ,
• not have to spend their limited precious energy & endure extra unwanted stress to overcome the obstacles they are currently faced with to access the legal Swiss AS option
• not have to endure the inconvenience & unwanted extra stress of leaving their friends family & home country to access the legal Swiss AS option,
• not have to cover the expensive costs to access the legal AS option in Switzerland
• provide the Australian tax payer & Govt substantial cost savings in full-time and palliative care

IN SUMMARY

I appreciate that there are many others who are worse off than me and so I am not looking to complain about my illness. It "is what it is" and I have come to terms with it.

I realise that unlike so many others I am fortunate and I feel blessed and thankful to have lived a full life, and to be in a position now where I am still able to do the work required to overcome the obstacles and have the financial means (thanks to you guys) to access the legal Switzerland option.

But what about those people in my situation that are no longer able to do the work required to overcome the obstacles and/or don't have the financial means to access the legal Switzerland option?

WE MUST HAVE A LEGAL ASSISTED SUICIDE (AS) OPTION HERE IN AUSTRALIA THAT PEOPLE IN MY SITUATION WITH AN ILLNESS "NOT NECESSARILY" TERMINAL and WHO ARE SOUND OF MIND CAN CHOOSE WHEN THEY FEEL THEY ARE SUFFERING AN UNBEARABLE QUALITY OF LIFE !

It's just wrong that as it stands at present Australians in my situation that cannot overcome the obstacles and/or don't have the financial means to access the legal Switzerland option are having to instead commit violent traumatic illegal suicide or face the scary prospect of an indefinite long term period in full-time or palliative care in Australia.

I believe this is a disgraceful state of affairs in Australia and just plain wrong and I am frustrated and angry about it and I want to gain support for what I passionately believe and I know many others believe is progressive CHANGE that needs to occur!

Tomorrow I leave Australia for the last time.
Wish me luck.
And thank you to everyone who helped me on this final journey.
Troy
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My Road to Switzerland

As you all know, some time ago I became a member of Dignitas with a view that I might need them for an assisted suicide some time in the future.

I submitted my papers and thought I would be right. That was until my specialist in Australia changed his mind about providing me with a detailed neurological report.

After this change of heart I could not qualify to go to Dignitas. Nor could I get any part of my down-payment of 4000 CHF back!

On Philip Nitschke’s advice I changed to the Life Circle group in Basel. They found a workaround to the problem with my neurologist. It is to this group that I’m going next week to end my suffering.

Among the papers I’ve needed to send over to Switzerland are:

* < 6 month old certified extract of my (and Chris’) birth certificates
* same for marriage certificate
* all my medical reports
* my bio
* my reason for wanting to come etc.

The list is endless. I’ve had many emails back and forth daily with Ruedi at Life Circle. It’s exhausting.

I outlined my reasons for wanting assistance, and provided my medical reports and other requested information.

And I’ve also needed to send Life Circle over 10,000 CHF in advance. This is in addition to the 4000 CHF Dignitas has kept.

But I’m pleased to say that under Swiss law I can now be legally prescribed a barbiturate which I will self-administer under the organisation’s supervision.

I am told I will fall asleep shortly afterwards, my heart will then stop and I will die peacefully in my sleep.

After my passing, a death certificate will be issued and I will be cremated. My ashes will be freighted home to Australia.

This will give Chris and our children time to focus on their welfare before my funeral service once my ashes have arrived home from Switzerland.

The Limits of the New Victorian Law & Why I’m Mad!

While anyone worldwide with enough money, time and patience can be considered for an assisted suicide in Switzerland, it is frustrating that I, as an Australian citizen, do not have the right to choose a similar legal option in Australia.

Although Victoria has recently passed a new Assisted Dying law (no doubt a huge step in the right direction), people in my situation with a condition like mine, do not have a necessarily terminal condition.

Therefore, no matter how much we are suffering, we CANNOT use this new law.

Why?

Because no doctor is able to predict the rate or extent of my impairment. And, much less, if and when I will die from it.

Yet this is a key requirement for an Australian to use this new Victorian euthanasia law.

Point 1: Assisted Suicide should not just be for the Terminally Ill

‘Assisted suicide' should be made a legal option in Australia. Assisted suicide should be available not just the terminally ill, but also for people (of mind) who are suffering with other "not necessarily terminal" conditions that cause them an unbearable quality of life.

Point 2: Legalising Assisted Suicide will Reduce the Suicide Rate

The 2nd point I would like to make is that after a 30- year career as a first responder firefighter paramedic (and having attended many suicides), and having seen the level of trauma suicide can cause to friends and family, I would argue that if we had a legal Assisted Suicide option in Australia, at least some suicides could be avoided.

While we wont know for sure, at least some of the hangings, train and cliff jumpers, and gassings could be avoided if people who are desperately ill or disabled, were not pushed into taking desperate measures.

The Problems with the Swiss Option for Australians

Point 3: Australian Doctors Should Help not Hinder Australians go to Switzerland

In recent months, I have discovered that even if I were to choose to access the legal Swiss Assisted Suicide option, there are doctors in Australia who make it difficult for anyone in my situation to pursue.

This is because they are reluctant to provide medical reports once they know their patient intends to use the Swiss AS option. They fear that their medical license may be cancelled if the Medical Board or College found that they have given a patient documents that helps them to access the Swiss AS option, even though it is legal.

This happened to me when I got the green light from Dignitas in May 2018.

I went to see my neurologist and I made the mistake of trusting and confiding in him that I had decided to pursue the legal Swiss option. I told him that I would likely proceed in October 2018.

At that time he promised me that he would give me an updated medical report when the Swiss asked for it.

On this basis I went ahead and made all of my arrangements and prepared myself, my friends and my family for my death in Switzerland only to discover that when I asked him for the said report, just prior to October, my neurologist told me he had changed his mind. He said this was due to "other implications".

Because of his change of heart, my plans for Switzerland were all put on hold. I was unable to proceed.

Now I don't blame my neurologist for doing this as I understand he needs to protect his medical license that is his livelihood.

But I do want to highlight the difficult position that our Australian doctors can find themselves in as long as Assisted Suicide is a legal in Switzerland but illegal here in Australia.

Their refusing to provide patients with documents the Swiss require and which without can potentially prevent them from accessing the Swiss option will have a huge adverse impact emotionally on everyone concerned; that is on patients, their friends and family and especially their children.

This is aside from the inconvenience and financial impact that they may experience.

Point 4: The Expense of the Swiss Option

And the 4th point I would like to make is that the Swiss option is unnecessarily onerous, expensive, exhausting, inconvenient and stressful for people in my situation.

As it stands currently Australians who do choose the Swiss option and who do manage to overcome the issue I have highlighted in my 3rd point above, are still faced with the following:

1. They must leave their home, country, friends and family.

2. They must have the means to cover the costs. I have spent:

• Initial membership registration $300
• annual membership $100
• travel to & accommodation in Switzerland $8,000
• admin costs for Swiss AS option $17,000

3. If they have my condition or similar they must also get the timing of their request for the Swiss to help with the AS correct. This is critical and extremely difficult as there is often a small window of time and
opportunity to get it right.

4. They must provide documentation to the Swiss in order for them to meet all Swiss legal authority requirements including:

• letter of request for help with AS
• life report
• relevant medical reports
• dental records
• affidavit
• official birth certificate issued within 6 months of your proposed AS date
• sodium drug pharmacy authorisation
• medical intervention instruction
• cremation ship ashes home instructions

One more update to come before I leave for the airport ...
+ Read More
My Life with Multiple System Atrophy (MSA) & My Right to Choose

I have now reached the stage where my speech is going, along with my ability to write, see, walk, coordinate movement and keep control of my bladder. While this is obvious to all, it is worst for me.

Each week that passes is becoming more and more unbearable. I have relentless fogginess in my mind, a lack of balance, vertigo and nausea. I feel generally unwell every conscious moment of every day.

I am now mostly-housebound. I am unable to work. It is increasingly difficult for me to function independently and interact in what I consider a meaningful way with my family and friends.

This is why I feel like I have reached a point where I am having to endure and suffer an unbearable ‘quality of life’.

And so I hope, readers, you can see that after having lived a clean, healthy, active lifestyle my illness has been my most difficult challenge. I have tried so hard to come to terms with so many things that have changed.

Things such as walking unassisted or going for a run, or a surf, or kicking a football with my son. I even accepted with good grace, early retirement from the emergency services that I so loved …

I have had to manage my fear of loss of independence. For an active proud man, the prospect of an indefinite long-term period in full-time (or palliative) care is quite scary. Especially given the ‘dodgy’ practices that have recently been discovered in Australian nursing homes, and which have prompted a Royal Commission to look into the care industry.

Based on how my situation has progressively worsened over recent years, I know I am inevitably tracking toward a point in time when I will have no control at all. My life will be intolerably diminished. I do not want my family and friends to ever see me suffer to this extent.

Given this state of affairs, I think it is quite understandable that I would contemplate the idea of ending my life on my own terms when and where and how I want.

Choosing how I will die is a fundamental human right: if we are sound in mind and we have an unbearable quality of life.

And so with considered advice, and the support of my friends, my GP, various counselors, a psychologist, and, most importantly, my family I am pursuing the idea of ending my life for my own self-benefit and self-interest (and not what I have assumed is in anyone else’s interest).

I have taken care of all my affairs and made sure my wife and children are going to be OK financially.

The Horrors of Suicide

I appreciate how confronting, emotive, & politically charged the topic of Euthanasia can be.

I never would have imagined in my wildest dreams that I would ever even contemplate it, let alone to take control of my end of life.

You see, as a Firefighter, I responded to suicides throughout my career and I saw the terrible, traumatic, long-lasting impact suicide can have on family and friends.

I was also personally touched & deeply impacted by suicide when a close fire brigade mate hung himself in his home garage around 10 days ago. We had just played a round of golf with each a few days before.

No one had any inkling he would do such a thing, least of all me. He had seemed happy as we were joking and laughing at golf all morning. The worst of it, and a thing I have carried with me since, is that his wife (who I worked with at our brigade HQ for many years) arrived home with their kids (aged 10 and 8) in their family car that afternoon. She discovered him hanging in the garage when she opened the door to park the car.

I have no doubt my friend’s actions had a horrifyingly traumatic impact and that this has left an indelible mark on his family. Something they have to carry with them for the rest of their lives. I especially feel for his wife and young children.

This is one of the reasons why I would never have thought that suicide – even if its well thought out and considered – in other words ‘rational’ - would ever be an option for me. I knew I would never want to put my family and friends through the trauma and life-long pain.

It was with huge relief that I learned that there is the ‘assisted dying’ option available in Switzerland. This means dying at a time of my choosing, in a way that is non-violent and which is sanctioned, controlled and supervised.

I thought that once my family and friends knew that I could get a legal, peaceful death in Switzerland - as opposed to suffering my condition with the indignity of needing someone to wipe my bum – then they would support me.

This is why I decided to apply to Switzerland for ‘assisted dying’ (they don’t call it euthanasia).
+ Read More
THE COUNTDOWN BEGINS ...

6 February 2019

Hello Everyone,

As I prepare to go to Switzerland, I want to tell my story to help enhance public awareness about the lack of a legal option for Australians who want choice over their end their life.

And I want to let you - the kind people who helped make my trip happen - what it's like to be me.

I will post a serious of updates here over the coming days and weeks. (Philip Nitschke is helping me with posting my message).

Here goes with my thoughts:

Whilst the legal 'Assisted Suicide' (AS) in Switzerland is technically available to anyone worldwide, there are many obstacles which I believe are unnecessarily expensive, inconvenient and stressful.

Ones that Australians, in my situation, need to know about.

By providing this update I hope to ultimately help influence political views and bring about the relevant legislative changes in the future:

1. to allow people in my situation to have a legal Assisted Suicide option in Australia: so they can choose to end their life on their own terms once they feel they have an unbearable quality of life (and as long as they are sound of mind); and

2. so that in the future Australians like me won't have to expend their precious energy and money and endure extra, unwanted stress to overcome obstacles to access the legal AS option in Switzerland. I have had many obstacles to overcome on my journey.

I am Troy Thornton.

I am aged 54, and married to Christine. We have 2 children, son Jack aged 17 & daughter Laura aged 14 & we live in Melbourne.

Born and raised in Sydney in this great lucky country Australia, I feel so fortunate to have had a happy enough childhood, to be always housed and fed, to have received a good education, and to have made lots of friends.

I have enjoyed a very active, healthy lifestyle never smoking, drinking excessively, or taking any drugs, and participating in many sports including football, surfing, snow skiing, scuba diving, rock climbing and parachuting.

And after having completed school and then a 4-year apprenticeship to become an electrical tradesman, I was fortunate to join the Fire Brigade where I had a long, enjoyable and hugely rewarding 30-year career in Emergency Fire & Rescue Services. I’m proud to have been involved in helping many people over that time.

I also feel really blessed and thankful to have had the opportunity in my life to have made many great special friends and to have traveled all over the world. I was especially lucky to have met and married my wife Christine and, with her, created such a great family of our own.

HOW I GOT SICK ... MY STORY

As you all know, I was recently forced to retire prematurely from Emergency Services. In July 2014 I was diagnosed with a progressive degenerative neurological condition called Cerebellar Atrophy.

This illness has progressively impaired my speech, writing, walking, coordination of movements, and I am told that I will not recover. There are no treatments or cure. My condition will possibly eventually impair my vision and autonomic functions such as bladder control, swallowing and breathing which would likely lead to an earlier than normal death.

However, whilst my doctors were able to diagnose my condition, they have been unable to determine the cause. They have ruled out the typically-known causes such as family history, genetics, concussion, major head trauma, or severe alcoholism.

And, as the condition varies with every individual, my doctors are not able to accurately predict the rate of progression or the extent of impairment and loss of function I will experience.

They also don’t know if, and when, it will lead to my death. I am told my condition is “not necessarily” terminal and that I am not likely to “die of" my condition but rather "die earlier than normal with it”.

So when I was first diagnosed back in July 2014 and I got the medical advice above, I set about doing a lot of research. I reached out to doctors around the world to learn as much as I could about my condition. And to explore any developments and trials of possible treatments.

I found that there were many laboratory researchers and doctors worldwide who were very kind. They were generous, and keen to connect and share information with me. Although even back then, there seemed to be a large disconnect of information between the upbeat back-end lab researchers (who were often very optimistic and excited about their work toward treatments) and the more conservative doctors dealing with patients on the frontline.

Unfortunately, while I did discover that there is some work being done in the genetics space, there is not much progress towards finding treatment options. This is consistent with what my own doctors in Australia told me.

Since July 2014, I have travelled, at considerable expense, four times to Bangkok, Thailand. In Bangkok I received Umbilical Chord Stem Cell (UCSC) Treatment. UCSC is not yet a legal option in Australia, but is legally available through a Chinese biotech company called 'Beike International'. Beike deliver this treatment from the 'Better Being Hospital' which is an alternative medicine and holistic therapies facility.

The UCSCs are injected by IV into the blood stream and also by lumbar puncture into the spinal fluid. This is administered in conjunction with hyperbaric, physical, and occupational therapies and a ketogenic diet over a 3-week period.

The theory is that the injected, but 'yet to be programmed,' new umbilical chord stem cells go to the site of the damaged cells and "program" themselves into the type of cells that need regeneration/repair. In my case these are the cerebellum cells.

As a lay man, the UCSC treatment seemed a logical and plausible option even though I have found no traditional medical doctors who believe UCSC treatment actually works. And even the UCSC doctors were careful to advise me that UCSC treatment would not cure my condition. That said, I can honestly report that I experienced some improvement, and I felt much better for a period of up to six months after each treatment.

And so, here I am now. For the past several years I have tried my utmost to ‘fight the good fight’. To manage my condition as ‘best I can’ which I believe I have done with a lot of discipline, determination and a positive attitude.

Unfortunately, and consistent with my progressive neurodegenerative diagnosis, my condition has now worsened and it has developed into the more life-threatening condition known as Multi System Atrophy (MSA).

Next chapter coming soon.
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