A BLIND boy whose life has been transformed by an Edinburgh school will have a Christmas card he designed delivered to the world's most famous people.

Nine-year-old Ben Wilson lost his sight and was severely brain damaged after a 16-hour fit as a six-month-old baby.

Over the years his parents Jenny and Neil wondered what quality of life he would have, but said the past three months at the city's Royal Blind School had turned his fortunes around.

The pinnacle of this so far was when he won a Christmas card competition run by Edinburgh South MP Nigel Griffiths, who will send it to the likes of US president Barack Obama, former leader Bill Clinton and Nelson Mandela.

Ben, who lives at the Newington school during the week and returns home to north Tyneside at weekends, may have the potential to gain some independence thanks to the work of the school.

Jenny, 39, said: "We tried for a good while to get him into the school, and I have to say the amazing reputation it has is dead right. Even though he has only been there for a few months, the difference is there to be seen."

Doctors said when Mrs Wilson awoke randomly eight years ago she might well have prevented the cot death of Ben.

She woke at 5am and carried him downstairs, and then the seizure happened.

"Call it mother's instinct if you will," she added. "I knew something was wrong.

"In hospital we were basically told his brain was like a scrambled egg, and anything he was able to do was a bonus. But since he's been in Edinburgh he has learned so much. He can help me with washing dishes. He is in a wheelchair but one day we hope he can get a powered one which would give him some more independence."

Although the benefits for his wellbeing of being at the school are clear, Mrs Wilson added that it could at times be difficult for her and her accountant husband, 43.

"We knew he had to go there," she said. "He was getting very frustrated with life and this has helped. He is calmer and happier, every night there is something to do at the school which is something I couldn't do as a mother of two other children.

"But it can be hard, when we speak to him or the school and hear what he has been doing we sometimes think we would have liked to have done that with him, or seen him do it."

Mr Griffiths, who met and congratulated Ben on Saturday, said: "The school is among the best of its kind in the world, and that is said by people from around the world. Whenever I go there I am asked deeper, more challenging questions by the pupils than I get from those at George Watson's or Heriot's."

"The work they do is terrific, and the result of Ben's design going to 6,000 people around the world who are on my Christmas card list, including Gordon Brown and Barack Obama, is testament to what can be achieved."

A seven-year-old blind boy has been taught to "see" using his ears.

Lucas Murray from Poole in Dorset has learned to use echoes to picture the world around him - similar to sonar techniques used by bats and dolphins.

He clicks his tongue on the roof of his mouth and from the sound that returns he tries to work out the distance, shape, density and position of objects.

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20,000 severely visually impaired people will be entitled to receive the higher rate mobility component of Disability Living Allowance, James Purnell, Secretary of State for Work and Pensions has announced.

From 2011, the real help will support 20,000 severely visually impaired people with additional mobility costs, allowing them greater freedom to get out and about, either socially or to find work.

At current rates this will mean an additional payment worth £29 a week to those who qualify (£1,508 per year).

James Purnell said: "This additional money could make a real difference helping people to go out to find a job, for instance having the extra cash to pay for a taxi to a job interview. Whether it is assistance getting out and about socially or to find work, ultimately it will transform the lives of severely visually impaired people and their families.

"The Government has always been supportive of this change so we are delighted that we have been able to include it in our Welfare Reform Bill.

"We are fully committed to making this change happen which will make a real difference to the lives of severely visually impaired people across Great Britain."

Jonathan Shaw, Minister for Disabled People, said: "I know many severely visually impaired people have been waiting to hear this good news and will be very happy with the outcome. The Government has been working closely with the RNIB to make this possible so I'd like to especially thank them for all their support."

The Welfare Reform Bill builds on the White Paper, Raising Expectations and Increasing Support, which was published in December.

The Bill will provide the additional powers to ensure that people make use of the help made available to them and maximise their employment prospects for the future.

To China for a cure

Mar 9, 2009 by Alexandra Shimo
China is not normally considered a world leader in surgical advances, but according to a number of its doctors (and the Canadian patients they’ve treated), it has leapfrogged ahead in stem cell treatments. A growing number of people are travelling to China for a $30,000 experimental treatment: stem cell injections. Most, like New Brunswicker Jean Christophe Haas, 40, decide to go because they have a debilitating illness and there isn’t much that Western medicine can do for them.

Haas has Machado-Joseph disease (MJD), a terminal neuromuscular disease that affects the body in a similar way to Parkinson’s, paralyzing it gradually. Although he was diagnosed 20 years ago, it took some years for the symptoms to become noticeable. At first, only his sense of balance and his coordination were affected. Then his speech began to suffer and he started slurring his words. In 2004, he had to stop work as an army mechanic because his motor skills were no longer up to par and, in the past couple of years, he started seeing double. His family felt an overwhelming sense of panic, especially because Haas’s mother had the same disease, and his grandmother died of it. His desperation was compounded by the sense that Canadian doctors had given up on him completely; one told him there was nothing to do but to accept his fate of an early death, says his wife, Cherie Haas. “It’s awful for a young man with a family to go in and hear that. It’s heartbreaking.”


Ms. Haas searched the Web and found stories of other MJD patients who seemed to have been helped by stem cell therapy at various Chinese hospitals. Many of these good news stories are posted on personal blogs or on the websites of the clinics offering the treatments. There are thousands of these testimonials, suggesting that hundreds of people go every year, says Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta, who has published studies on this issue.

Advertising on the Internet, these Chinese medical centres promise to treat a surprisingly extensive range of diseases and conditions, including ALS, autism, brain injuries, cerebral palsy, epilepsy, multiple sclerosis, Parkinson’s, spinal muscular atrophy, septo-optic dysplasia (which can cause seeing difficulties, blindness and mental retardation), spinal cord injuries and stroke. Foreigners are a major source of funds for the clinics. Some doctors like Dr. Huang Hongyun, a neuroscientist at Beijing Xishan Hospital, have treated many patients from outside China, including some from Canada, and he has published a number of papers in Chinese medical journals tracking patients pre- and post-procedure. And yet some North American doctors are critical of how the data was compiled, and skeptical of the treatments on offer.

Once Jean Haas decided to go, he told his plans to Guy Rouleau, a neurologist at Centre Hospitalier de l’Université de Montréal, who said there were slight risks of complications, and that it would probably be a waste of money. But otherwise he didn’t try to dissuade him. Raising the money for the trip was easier than expected: much of the town of Oromocto, N.B., pitched in to raise the $30,000, with neighbours’ kids shovelling driveways to help out, and the military and community organizations hosting breakfasts and fundraisers. In April 2007, he and his wife travelled to Shenzhen, China, and stayed a little more than a month. During that time, Haas had six injections of stem cells into his spine, and an intense program of physiotherapy, exercise, massage and acupuncture. The results were immediate, he says—his balance improved just a few hours after the first procedure. Back in Canada, his neurologist confirmed that Haas had indeed gotten better: he had about 10 to 15 per cent more movement, according to Rouleau, who examined him before and after the trip. It’s difficult to speculate why this occurred, but Rouleau believes the intense physiotherapy was the primary cause.

When the couple returned from China, they wrote about their experience on the Web. Word got around, and soon hundreds of people were calling them, Cherie says. A couple whose husband had a similar neurodegenerative disease even drove from Quebec to see them, and the man subsequently decided to make the stem cell trip. Another couple flew in from Taber, Alta., and decided to go to China after seeing the home videos of Haas’s progress. Those gains were partly due to the attitude of Chinese doctors, Cherie believes. They would tell Haas to push himself to his limit and even try to “retrain his brain,” she explains. “We saw miracles while we were over there. We put the word out because I know this works.”

Even if patients experience gains, it’s important to determine whether they are from the treatment, the exercise program or a more positive frame of mind. Any advances could be merely the placebo effect, as people often feel better after being treated, even if the procedure hasn’t worked and the gains won’t last, explains John Steeves, a professor at the college for interdisciplinary studies at the University of British Columbia who specializes in spinal cord injuries. Finding out whether any treatment really works requires clinical trials, and although Dr. Huang has published the results of his trials in Chinese medical journals, this data does not conform to international standards of medical analysis. Indeed, Steeves believes Huang deliberately flouts these standards to help his bottom line. “Dr. Huang has no interest doing a valid clinical trial because if it doesn’t give him good results, his income would dry up immediately,” he says from his Vancouver office.

Patients, like Haas, who seem to have been helped by stem cell treatments, are often eager to share their stories. They may become advocates for the Chinese medical centres; Haas’s story is publicized on the website of the company that organized his medical tourism trip. By contrast, it’s more difficult to find people who haven’t gotten better, or are worse after spending $30,000 on an experimental procedure. This might be because they feel duped, or because the Chinese stem cell treatment emphasizes empowerment—a “you can do it attitude.” Those who can’t “do it,” who go through the rigorous training program and end up no better off, may feel unlucky, cheated, or they may take the lack of success personally and feel that they have somehow failed.

Missouri resident Jeff Carneal, 38, doesn’t feel like a failure, but having spent so much money, he is frustrated and disappointed. He lost the use of his legs when he fell off a stepladder while fixing his father’s barn. He has spent the past six years working with different doctors trying to learn to walk again, even flying to Quito, Ecuador, for an experimental operation (nerves were removed from his legs and grafted onto his spinal cord, which cost a lot, but didn’t really help). When a Maclean’s reporter first met Carneal at the Beijing Xishan Hospital after stem cell treatment, he was enthusiastic and believed the operation he’d had a couple of weeks earlier had alleviated some of the shearing leg pain he’d felt ever since his accident. But when contacted a few weeks after he returned to the United States, he was more downbeat, and said the operation hadn’t really made any difference.

Negative outcomes aren’t widely reported, but they are more common than the Chinese hospitals would have you think, says James Guest, a professor of neurological surgery at the University of Miami. He visited Huang in Beijing in the summer of 2004 to sample and test the fluid being injected into foreign patients. The results were inconclusive, he says. Following this, he went a step further, and examined spinal cord injury patients pre- and post-treatment in China. The results, published in 2006 in the journal Neurorehabilitation and Neural Repair, make clear the difference between what the doctors see and what patients want to believe. Of the seven, six thought they recovered some limb movement, although in most cases the physicians measured very little difference.

A few had concrete gains: a 19-year-old had chronic, burning back pain that eased enough for the patient to stop taking painkillers. Another patient had fewer muscle spasms after the procedure and could angle his left hand a little more, although he phoned Guest six months later to say the surgery had not made any permanent difference. On the downside, there were also post-treatment complications: a 22-year-old contracted meningitis, pneumonia and gastrointestinal bleeding, which were managed with heavy medications, and another had a fever and confusion along with a drug rash. Guest is critical of the Chinese stem cell treatments: he believes some doctors are “motivated by profits” and “they place patients at risk for therapies which have minimal effect.”

Eight months after travelling to China, Haas was struggling with the symptoms of Machado-Joseph disease. He was having problems walking and was falling again. The family still had some money left over from their fundraisers, so they decided to make another trip to China, and took out a small loan. In March 2008, he and his wife went to China, this time to Qingdao in eastern China—the first hospital wouldn’t accept them since it was now prioritizing Chinese nationals over foreigners, explains Cherie. After four weeks of treatment, Haas had more energy and there were slight improvements in his balance and speech, he says. However, the gains lasted all of two months and today he’s just as bad as before the first trip. Nevertheless, despite the costs, and the dubious rates of success, the family would like to return again if they could afford it. “I would go tomorrow if we could,” Cherie says. “It gave people hope.”