Mum flies to Beijing for stem cell treatment for autistic daughter

barbara

Pioneer Founding member
The title actually has the word "unproven" in it, but I took it out. That word is getting worn out. What exactly does it mean? Cure? Quality of Life changes? Legal? It's tossed about all too freely in articles and discussions.


Sunshine Coast mum flies to Beijing for unproven stem cell treatment for autistic daughter

KATHLEEN DONAGHEY THE COURIER-MAIL OCTOBER 11, 2013

https://www.google.com/url?q=http://www.perthnow.com.au/news/national/sunshine-coast-mum-flies-to-beijing-for-unproven-stem-cell-treatment-for-autistic-daughter/story-fnii5v6y-1226738607476&ct=ga&cd=Njc4NjE1OTQzNTUwODU2MTA2OQ&cad=CAEYCQ&usg=AFQjCNHuW3JWv0NNt-LVXErLk_0KPxtXWQ

PARENTS of autistic children are pinning their hopes on controversial "stem cell" clinics in countries such as China, India and Germany.

Australian doctors and scientists are warning against the trend towards stem cell tourism, which costs patients up to $60,000.

But with autism, the most prevalent disorder affecting today's children, there are plenty of people willing to give it a go.

Sunshine Coast mum Denelle Brockhurst believes a better life for autistic daughter Talia, 6, could lie in the Wu Stem Cells Medical Center in Beijing.

The Chinese doctors claim they will inject human stem cells into the girl's body to help repair whatever is causing her severe autism and epilepsy.

Dr James Best, a GP who specialises in autism, said parents were being duped and exploited into wasting family resources on unproven therapies.

"Whether it (stem cell treatment for autism) works effectively, the answer is almost certainly 'no'," he said.

"Even the concept is really implausible."

There was also the danger of unregulated treatments being administered under questionable supervision and ethical standards.

Dr Best said the clinics, unable to produce peer-reviewed scientific papers and clinical trials, were instead promoting testimonials from former patients with conditions ranging from cerebral palsy to paraplegia.

One such personal anecdote spurred Mrs Brockhurst to seek a similar treatment for her daughter next year.

The mum-of-three has baked pavlovas and cakes to help pay for the $30,000 trip and will devote husband Chris's long-service leave and fundraise the remaining $15,000 with a world masquerade cent auction.

"So many people say 'why don't you put that money towards a house' because we rent ... but, at the end of the day, I'd like to know that I tried it," she said.

Mrs Brockhurst said she hoped there was a chance her daughter, who consumes multiple medications to function, could have a better life.

The family has seen improvements through a range of conventional treatments but wants more for Talia.

"I would really hope she would not have to be on all this medication to sleep, to go to the toilet, that would be major," she said.

"For her to sleep in her bed for the night, that would be really nice and not to have to give her that medication every day because I feel it's cruel doing that."

Mrs Brockhurst said her thinking changed from scepticism to hope after seeing other people's stories.

Associate Professor Megan Munsie, from Stem Cells Australia, a collaboration of scientists, said people who had made up their minds were difficult to dissuade.

A collaborative Stem Cell Tourism Research Project between Stem Cells Australia, Monash University and Brunel University, London, is under way to understand people's motivations and expectations.

"We have to be careful to try not to destroy their hopes," she said.

"For those who have made the decision we don't want to imply they are fools because often they have done a lot of research."

Prof Munsie said scientists were "very concerned" about the increasing availability of unproven, so-called stem cell treatments and the way they were marketed.

"It's exploiting people who are pretty desperate and feel like they have no other option," she said.

Stem Cells Australia's handbook advises that treatment is only proven for corneal and skin grafting and blood stem cell transplants for some blood, cancer and auto-immune diseases.

Monash University Professor Alan Petersen said a previous small-scale study he was involved in found most patients reported a "positive" experience.

For example one paraplegic claimed he could wiggle a toe after treatment.

However scientists have attributed these experiences to the "placebo' effect or other physiotherapy treatments offered alongside stem cell injection.
 
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