Can an eight-year-old boy change the face of childhood cancer? Can the struggles of one child transform a neglected disease into cutting-edge science and turn dispirited scientists into invigorated pioneers? Big shoes for a small, fragile boy whose body was wracked with cancer, but that's exactly what James Birrell did.

When he was four years old, James Birrell was like most boys of that age. He loved trains and adventures. But then, unlike most youngsters, he began developing troubling symptoms that worried his parents Syd and Pam Birrell.

His father remembers that James started vomiting. He was feverish. Then he started to complain about leg pains and didn't want to walk. Pam took James to the hospital for a bone scan and the radiologist had bad news -- he could see a tumour.

Struggling, Syd recalls the moment Pam came back from the hospital with the devastating news. "She came screaming up in the car, fell out of the car onto the ground and said, 'James has got cancer.' And then she was just beating the ground."

It was not just any form of cancer, but one of the most terrifying forms of the disease that can strike a child -- and yet one that most of us have never heard of: neuroblastoma. It is a rare form of cancer that attacks the nervous system. Up to 100 cases are diagnosed in Canada each year, usually among young children. No one knows exactly what causes it, but by the time the symptoms have emerged it's usually spread and there is no cure.

If a child is diagnosed before the age of 18 months, the chances of survival are increased, but as this is a disease that can look like other diseases in the early stages it often goes undiagnosed until the child is older. So sadly, the majority of children don't survive.

When James was diagnosed he had hundreds of tumors everywhere. Syd remembers that he could feel them all over James' body.

It was a devastating blow for a family that had just dealt with another battle with cancer -- Pam had been diagnosed with breast cancer and had undergone eight months of chemotherapy. Her one thought while going through her treatments: "There would only be one thing worse and that would be to see your child go through it."

Now James faced that same tough treatment. He underwent an initial round of chemotherapy. It seemed to work and all the tiny tumours that were scattered throughout his body disappeared. But the Birrells never, for a moment, thought they had beaten the disease. "Every twitch, cough, sneeze, headache" would cause them to wonder if this was "the disease."

"You never know when the executioner is going to come and knock on your front door and serve you with the papers and say, 'In the next few months your child is going to die'," Syd told W-FIVE.

Eighteen months later, the Peterborough, Ont. family was faced with bad news. James' cancer had come roaring back.

Syd remembers what he describes as "another worst day of our lives." They went to the hospital and had scans done and were told, "I'm sorry. This is really bad. But we don't have a cure. Your son is going to die. I can give you a year, but I can't give you two."

The Birrell family now faced the harsh reality of neuroblastoma. It's a killer without a cure.

Fundraising

Neuroblastoma is what's called an orphan disease. With fewer than 1,000 children diagnosed around the world each year it doesn't get much research money; it doesn't catch the eye of research companies and so, there is very little to offer patients when the cancer comes back.

Overwhelmed -- in shock, bitter and frustrated with the terrible news -- Syd turned to his computer and began documenting his son's painful journey. He would write regular e-mails in the middle of the night that he would send out as an update to friends. What Syd didn't know is that those friends would forward his e-mails to their friends, creating a network of thousands of people spread out around the world. All were following James' struggle as he embarked on his second round of chemotherapy. The e- mails even found their way to the Hollywood star, Tom Hanks, who found himself compelled enough by James' struggle to call the family and talk with James himself.

The higher doses of chemotherapy in this round left James violently ill. Syd and Pam asked him if he wanted to stop and let the disease run its course. But with the spirit that James was known for, when asked if he wanted to go to his "house in heaven," James' tenacious response was: "Gimme chemo. I'm always going to be fighting."

That's when his oncologist, Dr. Sylvain Baruchel, realized James was a unique patient. Baruchel notes that James was always willing to fight as long as he understood the full effects of what he was going to undergo, even if it was an experimental treatment. James was also interested in seeing the lab where doctors were working on the experimental treatments.

Baruchel recalls that James was very curious and wanted to know, "What is the drug? What is the drug doing to mice? He was interested in the research." According to Baruchel, this made James unique.

So unique, he even started raising money to fight his own disease. At the family church in Peterborough, they held a fundraiser. Hundreds came and $30,000 was raised to fund research into finding a cure for neuroblastoma. The money was donated to Sick Children's Hospital in Toronto. And, as the fundraising in James' name continued, another $70,000 was quickly raised. The money allowed scientists at Sick Kids to focus their work on looking for a cure.

James' motto: "Ya can't let cancer ruin your day," became an inspiration to those around him as his family and doctors continued in vain to try to find something that would change what was looking to be an inevitable outcome. The race was on to find new drugs, experimental drugs that might make a difference.

While all this work might get hopes up of finding a cure so that James could beat his cancer, Syd knew that they had to be realistic: new drugs were not likely to provide a miracle cure. But at least they offered hope.

There was no miracle.

Just after celebrating his eighth birthday, James died. Despite the sadness, recalls Syd, for the family there was a sense of relief. After four years of struggling, treatments, doctors' visits, and the rollercoaster ride hoping a cure might be found in time, there was peace.

Search for a cure

But James' story didn't end with his death. During his struggle with neuroblastoma, he had unknowingly given birth to something very important. The James Fund and the James Birrell Lab are his legacies. Syd Birrell has made it his mission to carry on and give other parents hope.

Working with him is David Kaplan, a scientist with an equally fervent wish: to do whatever it takes to find a cure. Working at Sick Kids Hospital, his research fuelled by the James Fund, Kaplan went looking for the reason that the cancer recurs even when it would seem that all the tumours had been killed.

What Kaplan and his scientific team discovered is that deep within the tumour cells there is a clump that they call the "queen bee" cells. They believe these mother cells are not killed by conventional treatments and are the reason neuroblastoma recurs. According to Kaplan, these are "the cells that will come back and eventually kill the child."

Kaplan is now looking for a way to kill those "queen bee" cells. But what to use?

Standard drug discovery and development often takes up to 10 years from laboratory to patient, time that children diagnosed with neuroblastoma don't have.

The other problem is that, while promising treatments can find research money from traditional sources, like the Canadian Cancer Society, there is little funding for initial investigations. It's a Catch-22 that scientists regularly face.

In the case of the neuroblastoma research, Kaplan and his team have turned to the James Fund for money. And, in a race to find a cure in months or years, rather than a decade, are looking at existing drugs used for treatment of other diseases -- anti-malaria drugs, transplant drugs, even chemicals found in mouthwash. The lab is now testing thousands of drugs on the "queen bee" cells. They can also get experimental treatments to children in as little as three months. It's high-risk research but it offers parents a glimmer of hope.

Fundraising is the key to keeping that optimism alive and the research ongoing. And Syd Birrell has made it his mission in memory of James. Almost monthly, there is a new fundraising event, from volleyball tournaments, to concerts. And at every occasion, Syd tells James' story and pushes the fundraising and research message.

There is also a bestselling book, "Ya Can't Let Cancer Ruin Your Day." It is a collection of the nightly e-mails Syd Birrell wrote to friends. Money from its sales, in fact, every penny raised by the James Fund, goes directly to the research dedicated to finding a cure. From the $30,000 raised while James was alive, his fund has now raised more than $3 million, with later donations matched by more traditional sources of research money.

Out of one boy's struggle and a family's tragedy has come a powerful movement. A fundraising organization that's created grassroots scientific research. And it's giving other parents hope, doctors new tools and kids with fighting neuroblastoma hope for a future.