Let there be hope...
Sunday, July 26, 2015
Thursday, July 16, 2015
Go Fund Me
As Robbie may have to have a bilateral hip disarticulation through a private surgeon we are raising funds to cover surgery costs and associated expenses. So as advised by a few people I have set up a Go Fund Me account.
www.gofundme.com/zd55ak5d
Professor Al Muderis, Australia's leading orthopaedic surgeon, has agreed to see Robbie again for reassessment. It was nearly three years ago that he first examined Robbie thoroughly. At the time totally opposed to a bilateral hip disarticulation. But recommended a double above knee amputation that was carried out on the 11th of December, 2013 at Penrith's Nepean hospital. The surgery was a 100% success for the purpose of removing pain in his lower legs and enabling me easier access for his personal care. But the amputations were not intended to address the excruciating pain in both his hips from bone spurs and arthritis that has led to Robbie living and sleeping in his electric wheelchair for nearly sixteen years and placing considerable strain on his entire spine. The amputations were a first step. But despite Dr Sorial reassuring us that further surgeries would be considered this has not eventuate as all other options have been dismissed.
Hip replacement is inappropriate and would still leave Robbie with two useless stumps that prevent easy access in cleaning him. Very fat stumps that are obstructing access to his stoma resulting in his need to now wear garbage bags as any wafer and bag becomes compromised.
Removing the heads of both femur bones would only leave the danger of the remaining bone riding up into the pelvic region due to muscle contracture from Robbie's particular cerebral palsy. And again cutting the ligaments and tendons entirely would not remove the problem of obstructing useless large stumps.
No surgeon has yet to advise us of any practical and beneficial alternative over that of the requested bilateral hip disarticulation.
The argument that such surgery 'might' make his condition worse has no foundation. Without the surgery he is deteriorating at a rapid pace. Which will soon result in him not being able to sleep in a bed or a wheelchair and no body will be able to care for him. He will then be placed in a hospital bed plied with heavy pain killers and sedatives and undergo a slow painful death. Or choke on his food like many with cerebral palsy have and inhale food leading to pneumonia and death from medications interfering with chewing and swallowing function. Robbie is already a high choke risk in his wheelchair sitting up straight! UNACCEPTALE alternative!!!
Nor will he loose his balance as he has no balance anyway due to clonus and the muscle contracture that gravitate him to toppling to his left side. He at all times has a side support and strap around his chest. With no clonus or muscle contracture Robbie would become stable.
Both Robbie and I do not believe there will be a major issue with phantom pain either. After his double amputation he did not suffer phantom pain to any high degree. To this day he only gets mild sensations and that is when he is stressed. Every one believed severe phantom pain would occur and that the amputations would not be a success.
I invite any surgeon or person dealing exclusively with individuals with cerebral palsy to a public debate on why he or she feels Robbie would be worse off given a bilateral hip disarticulation.
The argument that removing Robbie's legs could be a world first for someone with cerebral palsy so let's not go there is ridiculous and discrimitory. Medicine is all about world firsts. Progress after trails. Some trials work but many fail. I challenge anyone to contest me over why Robbie should not be able to decide his own fate when his fate soon will be death without surgery. Over the past 21 years surgeons have rebelled against surgical procedures he has had in the past believing such surgeries would 'destroy' his life. Nope! All treatments or surgery that Robbie has requested after becoming informed have been successful.
www.gofundme.com/zd55ak5d
Professor Al Muderis, Australia's leading orthopaedic surgeon, has agreed to see Robbie again for reassessment. It was nearly three years ago that he first examined Robbie thoroughly. At the time totally opposed to a bilateral hip disarticulation. But recommended a double above knee amputation that was carried out on the 11th of December, 2013 at Penrith's Nepean hospital. The surgery was a 100% success for the purpose of removing pain in his lower legs and enabling me easier access for his personal care. But the amputations were not intended to address the excruciating pain in both his hips from bone spurs and arthritis that has led to Robbie living and sleeping in his electric wheelchair for nearly sixteen years and placing considerable strain on his entire spine. The amputations were a first step. But despite Dr Sorial reassuring us that further surgeries would be considered this has not eventuate as all other options have been dismissed.
Hip replacement is inappropriate and would still leave Robbie with two useless stumps that prevent easy access in cleaning him. Very fat stumps that are obstructing access to his stoma resulting in his need to now wear garbage bags as any wafer and bag becomes compromised.
Removing the heads of both femur bones would only leave the danger of the remaining bone riding up into the pelvic region due to muscle contracture from Robbie's particular cerebral palsy. And again cutting the ligaments and tendons entirely would not remove the problem of obstructing useless large stumps.
No surgeon has yet to advise us of any practical and beneficial alternative over that of the requested bilateral hip disarticulation.
The argument that such surgery 'might' make his condition worse has no foundation. Without the surgery he is deteriorating at a rapid pace. Which will soon result in him not being able to sleep in a bed or a wheelchair and no body will be able to care for him. He will then be placed in a hospital bed plied with heavy pain killers and sedatives and undergo a slow painful death. Or choke on his food like many with cerebral palsy have and inhale food leading to pneumonia and death from medications interfering with chewing and swallowing function. Robbie is already a high choke risk in his wheelchair sitting up straight! UNACCEPTALE alternative!!!
Nor will he loose his balance as he has no balance anyway due to clonus and the muscle contracture that gravitate him to toppling to his left side. He at all times has a side support and strap around his chest. With no clonus or muscle contracture Robbie would become stable.
Both Robbie and I do not believe there will be a major issue with phantom pain either. After his double amputation he did not suffer phantom pain to any high degree. To this day he only gets mild sensations and that is when he is stressed. Every one believed severe phantom pain would occur and that the amputations would not be a success.
I invite any surgeon or person dealing exclusively with individuals with cerebral palsy to a public debate on why he or she feels Robbie would be worse off given a bilateral hip disarticulation.
The argument that removing Robbie's legs could be a world first for someone with cerebral palsy so let's not go there is ridiculous and discrimitory. Medicine is all about world firsts. Progress after trails. Some trials work but many fail. I challenge anyone to contest me over why Robbie should not be able to decide his own fate when his fate soon will be death without surgery. Over the past 21 years surgeons have rebelled against surgical procedures he has had in the past believing such surgeries would 'destroy' his life. Nope! All treatments or surgery that Robbie has requested after becoming informed have been successful.
Saturday, July 11, 2015
Day 15
Hi, Everyone.
It is now day 15 of our sit-in at 50 Station Street, Penrith, NSW. We are under censorship by the Australian Federal Government and State governments; Australian Medical Association; and Australia Medical Board. All major and popular TV media programs such as 60 Minutes, A Current Affair and a list of others are fully aware of our story but have not come near us. Nor has any papers outside the Penrith area as far as we know.
Please, anyone with media connections in other countries that are not owned by Rupert Murdock can you get our story out the internationally. Thousands of disabled, carers, very ill people and the indigenous are under censorship here in Australia. Australia hasn't earned it's place by the UN of being on of the worse countries for abuse and neglect toward it's disabled, indigenous and refugees for nothing!!! Help us please.
Our iPads were stolen from our tent. But we have now replaced them as I always set emergency money aside for such disasters. For Robbie it is a disaster as that is what keeps him relatively sane while confined to his wheelchair day and night! My iPad had photos that can not be replaced and my advocacy work/links in it!!!
Then yesterday early morning, Saturday, someone ripped the controls off of Robbie's hoist. Charming!
But we stay put. We will not move till a hospital publicly announces that it has found willing surgeons to save Robbie's life by allowing him the right to honor his 30 year need to have a bilateral hip disarticulation. Surgeons who genuinely live by their Hippocratic oath not to harm. Surgeons who do not indicate that it is acceptable for a patient to go home and suicide along with his or her carer when both their lives can be saved. How shameful for any doctor or surgeon to have such an attitude! What shame they bring on other honorable men and women in the medical profession who fight daily to save the lives of their patients without discrimination or fear.
Robbie also on facebook. Please share. https://m.facebook.com/SaveOurRobbie
It is now day 15 of our sit-in at 50 Station Street, Penrith, NSW. We are under censorship by the Australian Federal Government and State governments; Australian Medical Association; and Australia Medical Board. All major and popular TV media programs such as 60 Minutes, A Current Affair and a list of others are fully aware of our story but have not come near us. Nor has any papers outside the Penrith area as far as we know.
Please, anyone with media connections in other countries that are not owned by Rupert Murdock can you get our story out the internationally. Thousands of disabled, carers, very ill people and the indigenous are under censorship here in Australia. Australia hasn't earned it's place by the UN of being on of the worse countries for abuse and neglect toward it's disabled, indigenous and refugees for nothing!!! Help us please.
Our iPads were stolen from our tent. But we have now replaced them as I always set emergency money aside for such disasters. For Robbie it is a disaster as that is what keeps him relatively sane while confined to his wheelchair day and night! My iPad had photos that can not be replaced and my advocacy work/links in it!!!
Then yesterday early morning, Saturday, someone ripped the controls off of Robbie's hoist. Charming!
But we stay put. We will not move till a hospital publicly announces that it has found willing surgeons to save Robbie's life by allowing him the right to honor his 30 year need to have a bilateral hip disarticulation. Surgeons who genuinely live by their Hippocratic oath not to harm. Surgeons who do not indicate that it is acceptable for a patient to go home and suicide along with his or her carer when both their lives can be saved. How shameful for any doctor or surgeon to have such an attitude! What shame they bring on other honorable men and women in the medical profession who fight daily to save the lives of their patients without discrimination or fear.
Robbie also on facebook. Please share. https://m.facebook.com/SaveOurRobbie
Sunday, June 28, 2015
DON'T LET ME DIE!!!
UP DATE (Also please read first article from this site. Thank you)
Hi, my name is Robbie Davies and I was born in 1973 with cerebral palsy quadriplegia. When I was 12 my parents were told not to bother with physiotherapy and placed in a wheelchair. Previously I 'bunny hopped' around on the floor and could rollover independently in bed. Six months after being placed in a wheelchair I could do neither.
Since that time I have wanted my entire legs removed (bilateral hip disarticulation). For the past 15 years I have been confined 24/7 to a wheelchair as the pain in my hips due to arthritis and bone spurs became so unbearable that I could no longer sleep in a bed. Infact, I tried to take my life in April 2009 while in the 'care' of the Royal Public Darwin Hospital (known as the Death Trap) as the pain of even sitting in my wheelchair had become so unbearable. I now have massive scarring on my scalp due to my 'trip' down the stairs in my electric wheelchair.
In 2012 due to relentless abuse and indifference by the medical system my carer of 21 years fled with me to Penrith, NSW. Arriving at Nepean Hospital I begged to have my legs removed but was refused. 'No one will do that for you', I was told. Nor was anyone willing to help me find someone who would. In 2013 surgeons at the same hospital reluctantly agreed to perform a double above knee amputation in December, 2013, due to pressure from a local MP and advice from Australia's leading orthopaedic surgeon. Though my carer and I knew it would not remove the hip pain and the reason for my confinement to my wheelchair we had no choice but jump through the hoops of those controlling my life. I was reassured that further operations would be considered later if necessary.
June, 2015. All further surgeries have been dismissed. My spine is now collapsing from sitting up in my wheelchair for nearly 16 years. My lower jaw has moved forward making chewing more and more difficult as my molars no longer touch. Again, I have been refused a life saving bilateral hip disarticulation. In May my surgeon at Nepean Hospital bluntly refused. He reluctantly agreed to see me again five weeks along, on 17th of June, but two days before the appointment had a patient advocate phone to say that due to patient/doctor relationship breakdown he had cancelled the appointment. During the May appointment he said he did not want to harm me with such surgery and thus break the Hippocratic Oath. But he was comfortable with me going home till I could nolonger sleep in my wheelchair and forced to possibly take my own life it seems, and while at it make sure my carer also took himself out. He stated that no one with cerebral palsy has had such surgery, apparently. I said it was my choice to risk it killing me as I was going to die soon anyway if I did not take the chance. He shook his head. No I have no choice over my future. None at all. The doctors can dope me up and put me away in a home where everyone agrees I would shortly die thus be complicit in my death but not made accountable. The doctors through their indifference and negligence can cost me my life and get a tick of approval. It's ok for me to take my life with assistance as it's not their problem, so it seems. But anyone helping me will get 14 years for murder. When people with cerebral palsy die before they are 70 due to suicide or while institutionalised or in hospital it is generally due to neglect and abuse. Not because we naturally die early.
Please, there must be a hospital willing to perform a bilateral hip disarticulation and save me from a fate worse than death. An agonising early unnecessary death in a hospital bed. Another silenced statistic no one will hear about. Another inconvenience swept under a backward and negligent medical system in Australia. I would go to China where the most advanced care for those with cerebral palsy is available but I can not afford it nor should I have to travel overseas. Australia has recently been put on the United Nations list as one of the most abusive countries towards it's disable, indigenous and refugees. I am a prime example of that abuse. I will not be silenced. I will fight; not die.
My carer, Sam Davies, has created a website for me at www.saveourrobbie.blogspot.com to show how you, the general public, might be able to help. Also www.cerebralpalsymed.blogspot.com
Till I can get help I will continue my sit in 24/7 at 50 Station Street, Penrith, NSW, Australia. Hopefully the police will not arrest me through order of the authorities due to my exposing my abuse and that of thousands in Australia often resulting in our deaths. The below people are aware of my situation but apparently nothing they can do. Unacceptable!!! I'm not worthless. Living at home for 21 years has saved the tax payer 16 million dollars.
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Fiona Scott MP: fiona.scott.mp@aph.gov.au (02) 47313700
31 High St, Penrith, NSW.
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Stuart Ayres MP: penrith@parliament.nsw.gov.au (02) 47228660
Shop 23 Ground Floor, Penrith Centre, 510-534 High Street, Penrith, NSW.
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Professor Al Muderis: (Australia's top orthopedic surgeon) belindabosley@gmail.com 0423214342
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Thank you.
xx
Monday, May 18, 2015
Support by email
Images of Robbie's left hip, neck and spine.
All those wishing to support Robbie please copy and forward the following to:
belindabosley@gmail.com (Professor Al Muderis)
fiona.scott.mp@aph.gov.au (Fiona Scott, MP)
info@drramisorial.com.au (Dr Rami Sorial)
Dear Professor Al Muderis (World leading orthopaedic surgeon), Fiona Scott (MP), Dr Rami Sorial (Specialist orthopaedic surgeon).
As a friend of Robbie Davies I support anyone helping to save his life by granting his 30 year wish to have a bilateral hip disarticulation (total removal of both legs). He is fully aware of the risks and is totally informed. He is also aware that not having disarticulation as a 12 year old has lead to him being confined to a wheelchair. All of us who care and very much love our friend are aware that without the procedure he will remain confined to his wheelchair as he has been for fifteen years to his detriment. He is aware that such a procedure could cost him his life but is highly unlikely. But what is guaranteed is his death when he is eventually placed in a hospital or institution due to deteriorating health due to not being able to move. He will join the many countless other cerebral palsy people who have needlessly died due to inaction or inappropriate care and treatment while institutionalised or hospitalised. This we do not accept. So knowing the life threatening situation of the present inaction we support anyone supporting Robbie and that it is his right as a 42 year old man to decide his own destiny be it good or bad.
SAVE OUR ROBBIE!
A copy of the above email can be found at: saveourrobbie.blogspot.com
Thanks all for your support.
Robbie and Sam Davies
We will keep you all updated.
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