About Me

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Born 1969 England. Arrived in Australia 1972. Single. No children. Partially disabled from severe osteoporosis, pituitary gland tumor (benign), myopathy and Ehlers-Danlos Syndrome (hypermobile in every joint). 18 yrs caring for my quadriplegic cerebral palsy friend, Rob. Ceramic artist www.sam-davies.blogspot.com

Sunday, August 4, 2013

Russian children with CP travel to China for treatment

“The children will be treated with both Chinese traditional medicine and western medicine in Shanxi Provincial Cerebral Palsy Rehabilitation Hospital,” said Guo Xinzhi, head of the aforementioned institute. Describing the treatment that the children will undergo in hopes of ameliorating their condition, he said, “Chinese acupuncture therapy will play a key role in the treatment.”
Approximately two-thirds of the children have already begun to receive the first stage of treatment in the hospital. “Thanks to the previous treatment, he can walk holding my hand and eat with a spoon now,” said a mother of a three-year-old boy and patient named Ivan. “I am hopeful after seeing him make progress in his movement.”
This journey for treatment is funded by the Danko Charity Foundation in Dagestan. Russia has sent children with cerebral palsy to the hospital for treatment regularly: twice a year since 2008. Approximately 30 children are sent each time. More than 200 Russian children, including those who are self-funded in their treatment, have received therapeutic care at the Chinese facility.
Cerebral palsy is “caused by damage to the brain before, during, or shortly after birth, which leads to a lack of co-ordination in muscle movement.”
(6 part video with transcript. 4/08/2013. Unfortunately, Blogger will not allow videos over 100MB thus 6 videos. Thank you for your patience.)
Part 1

"My lower legs have ruined my life. Because of my lower legs I can't sleep in a bed; I can't be comfortable in any kind of wheelchair. I...for the physical care I do need it's far, far more complicated that it needs to be. The doctors know that by having me keep..." cont. Part 2
Part 2
"...that by having me keep my lower legs they are keeping me immobile. They are keeping me from sleep; from exercise; from social interaction; from so many things that we as humans think of as inalienable rights. But those rights have been taken away. And these rights have been calmly brushed away with the excuse that, "Oh, if we take your legs off, your lower legs off, you're going to be in a lot of pain..." cont. Part 3.
Part 3
"...your lower legs off, you're going to be in a lot of pain". They know I'm already in pain. I'm in so much physical and emotional pain that I want to die. That's why I came to Penrith...to give life one more chance. But as soon as I mentioned amputation so that I could sleep in a bed; so that I could roll over; so that I could have a great deal more independence, they said, "Oh, nobody would ever even consider that". Well, I..." cont. Part 4.
Part 4
"...nobody would ever even consider that". Well, I also had a talk to another doctor. He could see the value of taking away my lower legs so that I could move and do all the things I've already mentioned. But he's not allowed to go near me. These doctors are deliberately keeping me immobile. And they're not only ruining my life, they're destroying the life and health of my carer. Without my lower legs gone I will not live long enough and I get to see my carer..." cont. Part 5.
Part 5
"...long enough. And I get to see my carer die slowly as well, with no hope; with no happiness; with no desire for anything but death too. The Minister for Health, The Honourable "Laugh, Laugh" Skinner won't help. The HCCC (Health Care Complaints Commission) won't help and any organisations that have tried to help me with my situation have basically been told to leave this alone or you're in trouble. The Australian health system..." cont. Part 6
Part 6
The Australian health system is keeping me immobile.
"The Australian health system is keeping me immobile. And they're not just doing it to me. They're doing it to thousands of others like me and they're ruining the lives of their families and friends who care about them in the process.
Can we as human beings - as Australians - sit idly by while this is happening to thousands of people all over, even though we know it can be fixed! Come on people. What's going on here?!"