THE DREAM IS BORN
"Out of difficulties grow miracles" - Jean De La Bruyere

April 1998

Canada 's youngest province was soon to celebrate its 50th anniversary in Confederation.

The jagged coast of Newfoundland has a narrow opening to the little harbour at Quidi Vidi, on the eastern edge of St. John's . The Atlantic Ocean rises as it pushes its way through the gap and the green and black waters climb the face of the rock cliff before sliding back in a white foam, pausing for just a moment before the cycle begins again. Nestled in the inner harbour, behind the breakwall that protects it, is a scene reminiscent of a Newfoundland postcard. Fishing boats in orange and blue are reflected in a salt water mirror as they tug every now and then at the limp ropes that hold them to weathered wooden docks. Work sheds scattered around the inner harbour are draped in an assorted web of fishing nets that have been hung to dry.

Above the harbour, small houses cling to the cliff facing out to the sea. Some are red, some are white, and some are yellow. Most of them look worn by the weather. Smoke from the chimneys is quickly stolen away by the wind that's always there.

In the April cold, ice and snow cover the rocks and the roofs on south side of the harbour, which is shaded by high cliffs. Some old snowdrifts are still tucked in between the houses. On the sunny north side, the wooden docks look warm and inviting. To the east lies Ireland , a shorter distance than Vancouver is to the west.

Here is where it will begin again. For a moment I close my eyes, bow my head, and pause to let my thoughts drift back to a summer that sometimes seems like yesterday, a summer day that has led to my being on this rocky shore on Canada 's east coast.

It was June of 1986 and the summer that lay ahead held promises of barbecues and weekends at the beach. But the spirit of the season was soon to be broken.

In the darkness, the windshield wipers swept back and forth with a constant rhythm. Through the rain, the taillights ahead were a blurred red line moving silently off into the distance. On the other side of the median the headlights made a similarly blurred white line in the opposite direction. Occasionally the sidelights of a transport truck would creep by the window and spray from the tires would blur the colours from the lights even further. Somewhere further down Highway 401 was London .

Driving home from the annual fishing trip to Lake Temagami in Northern Ontario usually takes about six hours. The final hour of the trip is always the quietest. It was no different this time as I stared out the window into the darkness and let my thoughts drift to home and my wife Sherene and our three young boys, Tyler, Jesse and Tim.

It was close to midnight when I pulled the car into the laneway. It seemed even more unusual to discover that my wife Sherene, a very disciplined person who usually heads to bed early, was still up. In the minutes that followed came the shattering realization that something was dreadfully wrong with one of our children.

Jesse, our middle child, was born in 1980. A quiet, independent little boy with a shy smile, he had a normal early childhood, joining Beavers and then Cubs. He stuck pretty close to home with his younger brother Tim and always looked forward to going off to school with his older brother Tyler. Then just after he turned five, Jesse began to exhibit the first ominous signs that something wasn't right and the medical consultations began. It was a parent's worst nightmare. Our fears were realized when the diagnosis of Duchenne Muscular Dystrophy was confirmed. It was a disease we knew little about but it would soon be as familiar as our heartbeats.

It couldn't happen to us, we reasoned. But in the dark of night, with our small sons sleeping soundly nearby, we had to come to grips with what was happening, how it would affect not only Jesse, but also all of us who loved him. DMD is the most severe of all the neuromuscular diseases; we had to prepare for what lay ahead.

The family faced a major crisis that could not help but tear emotionally at all of us. Every parent of a child with an illness goes through phases which torture the mind and soul long after the disease is a certainty. The initial denial gives way to guilt is it something I did wrong? What could have prevented this happening to our baby? Eventually, the realization comes that analyzing the cause of the anguish is wasted effort. The day comes when you must put aside your own grief and begin the process of learning about the disease and the perceived barriers to a normal life. Life goes on, and your strength is better spent trying to keep the family strong.

The disease takes its inevitable toll on muscles and limbs. As parents you continue to explore every avenue that might prove to be the miracle. We quickly learned how little research had been done on Duchenne, and how time-consuming and expensive medical research really is. Looking back, we realized we hadn't given much thought at all to medical research on a conscious level, and now it was on our minds almost every waking moment. Jesse's diagnosis would forever change our way of thinking, and would lead us to dream dreams and take on challenges we would never have thought possible.

As a broadcaster, I had been fortunate to develop a fairly extensive circle of friends and a network of media connections. I also had access to people who worked in medical research. Sherene and I were learning quickly that the biggest obstacle faced by researchers, including those involved in the study of gene based illnesses, was the lack of adequate funding. Some of Canada 's most prominent researchers were being enticed elsewhere with promises of better facilities and more funding. Governments didn't seem to be listening, and the public interest in and knowledge of genetic disease was limited.

As parents, we felt helpless and alone, even though we were surrounded by caring family and friends who loved us and wanted the best for Jesse. Our concern for him had to be balanced with the needs of our two other children. The need to earn a living also had to be factored into the picture. We were a family of five and the road ahead was shaping up as a tough one.

We learned very quickly that parents of special children often find themselves walking a tightrope, trying to come to grips with medical problems while at the same time trying to take care of the needs of everyone else in the family. Those demands leave parents little time or energy to devote to each other. This is the turmoil that tears families apart, and we were determined from the beginning not to let this happen to us. In the early days after Jesse was diagnosed, it was Sherene who shouldered most of the burden at home and we all drew strength from her. The extent of that strength in those first months seemed to surprise even Sherene herself. She's always been a strong, confident mother with a quiet forceful manner. Still, nothing in her life experience had prepared her for this.

As the 1980's moved along, so did Jesse. He grew into a determined youngster who was not about to let a thing like a disability keep him from doing what he wanted, and we treasured and supported that independence. His ability to keep smiling and to cope with the curves life had thrown him continued to amaze us while we continued to search for the answer that would make everything right for our little boy.

Part of the solution came in 1987 when Dr. Ron Worton and his team at Toronto 's Hospital for Sick Children identified the gene that causes DMD. For the first time, Sherene and I saw something that looked like a small spark of hope. Science had never been my strongest subject in school, and the genetics maze certainly looked like a very complex world that wasn't about to surrender its secrets easily.

I had read about how the blueprint for life is DNA (deoxyribonucleic acid). And like most people who have leafed through magazines in doctors' and dentists' offices, I recognized this as something that looks a lot like a spiral staircase. That was about it. What I needed was a picture I could draw in my mind that would make it easier to understand how it all fit together. And sitting on the bookshelf across the room, painted in red and green and gold, the answer was staring back at me in the form of a wooden doll.

Matriuschka dolls from Russia became very popular in the fall of 1972 when Canada and the Soviet Union met in hockey's historic Summit Series. The doll that was sitting on the bookshelf was one that Sherene and I had bought in Vancouver . It's about a foot tall, and when you open it, there is another doll inside, and inside that doll is yet another one, and so on. The dolls keep getting smaller and smaller. And under the microscope, the genetics story did the same thing as the parts kept getting smaller and smaller.

We came to understand that the human body has as many as a hundred trillion cells and just like looking inside the first doll, there is a nucleus inside each cell. Much like opening the next doll, we found that each nucleus contains 46 chromosomes. The chromosomes are arranged in 23 pairs, plus an X and a Y chromosome. One chromosome of every pair comes from each parent. Working down toward an even smaller picture the chromosomes are filled with tightly coiled strands of DNA, making up the spiral staircase picture. Genes are segments of DNA, and look like the steps of that spiral staircase connecting one side to the other. Those strips contain the instructions for making proteins - the building blocks of life itself. We now knew that the gene we wanted to see corrected lay on the X chromosome. But there were still more questions than answers.

Since the early fifties, scientists have known that DNA is the basic stuff of heredity. Its chemical structure was unlocked in 1953. DNA acts like a biological computer program that is some three billion bits long and spells out the instructions for those building blocks.

The picture was getting clearer to us. Our only hope was research and we had to face the reality that we were in a race with time.

Inspiration comes to us at the most unpredictable of times. It came to me on a fall day in 1994. We had known for some time that the day would arrive when Jesse would have to face life in a wheelchair. It had been a heart-wrenching discovery to learn that Jesse suffered from a genetic illness for which there is no cure. As the years slipped by we felt helpless and the disability tore at us as Jesse's strength continued to be sapped by the
disease and the need for a wheelchair was becoming more apparent. It didn't seem fair that this should be happening at one of the most vulnerable periods in a boy's life. Slowly we were becoming hardened to the reality that life makes no promises. No one could prepare Jesse for what lay ahead. Sherene and I were determined that as a family we would face this together and do something about it. But what?

On a beautiful October day in 1994 I was walking back home from the little town of Ilderton , about twenty kilometres north of London . I had taken up walking as a form of exercise to stay in shape. Looking back, it seems ironic that I was beginning to walk more than ever when Jesse was losing his ability to walk at all. It was about this time that I said good-bye to the game of golf. Jesse was at an age where it required both Sherene and I to do the lifting and moving. I couldn't leave Sherene to do it all alone, so I left the golf clubs in the garage and focused on more important things.

So there I was on that fall day walking along on the gravel at the edge of the road. The sun was shining and the rolling countryside was well on its way to showing off that Southern Ontario tartan of copper and red and yellow as the leaves made ready for their grand finale. I loved walking because it gave me time to think. As I looked at the blue sky and saw the fields of grain waving in the wind, the thought came to me in the form of a question: I wonder if we could ever turn this walking into something meaningful? Almost as quickly as it came to me, the question faded away unanswered.

Although I am not a deeply religious person, as I continued to walk in the days that followed, I took time to think and to ask for strength if there wasn't to be a cure for Jesse.

As the days grew shorter and winter crept closer, the question kept coming back to me. Each time it did, it took longer for it to go away and I found myself starting to daydream. Was there something that one father could do to bring about an awareness of the need for more research funding?

I came to the realization that while one person probably couldn't do it alone, there is strength in numbers, and Sherene and I had been blessed with a wonderful extended family, lasting friendships and people who would stand by us in anything we decided to do. That was the source of our strength and slowly the die was cast in my mind. To dramatize the need for research funding, I would push Jesse, in his wheelchair, from the Manitoba border right through the heart of Ontario to Ottawa , and on to the Ontario border with Quebec . It was easy to say, yet it would prove to be a daunting challenge.

The idea for a wheelchair marathon, with me pushing Jesse across 3300 km of our home province, was initially met with the comment, "Are you out of your mind?" from just about everyone including Jesse, the central figure in the plan. I guess they had every reason to have doubts. I was 48 years old, and while all that walking around London meant I was in reasonably good shape, I was no athlete. I'd never tried serious competitive walking. Now I was planning to push a wheelchair eight hours a day every day for four months. But by now I was determined and, with Sherene at my side, the support began to build.

Jesse is a lot like his mom, who seldom acts on impulse. He likes to think things through before he makes a commitment. Eventually, as happens with situations that are maybe meant to be, Jesse championed the idea of this unique fundraiser for gene research. It would be an opportunity for both of us to see our home province in a way that few people ever get to experience. We all knew it was an opportunity to reinforce the need for more funding. It was certainly going to be an educational experience and, as a dad, I was hoping it would be the thrill of a lifetime for my son.

It's one thing to have a dream; it's another to put the wheels in motion. Once the target was set and we were committed to making the trip across Ontario in the summer of 1995, the real work began. The first thing to be done was to find people with a positive outlook who would be willing to lend us both their knowledge and their energy.

This wasn't going to be easy because while we initially shared the dream as a very private family, we were now going to have to step into the public arena. As a broadcaster I didn't mind doing this, but I worried about what it would mean for my son and the rest of our family.

No matter what the project, you have to start somewhere and when it comes to recruiting volunteers, one of the best volunteers in Canada happened to live in the village of Thamesford just east of London . Ron Calhoun had been the national fundraising chairman for the Canadian Cancer Society in 1980 and had coined the phrase Marathon of Hope for Terry Fox. When the plans were laid out, Ron never hesitated in coming on board and Jesse's Journey was born.

Slowly we started to build the team not by selecting people right away, but identifying tasks that needed to be done, and then finding the right people to do those jobs. There were times I thought the list of job categories was endless. We needed help with everything from transportation, communication and accommodations, to insurance, media and police, and just about everything else in between. But always at the front of my mind was how we were going to take care of Jesse, because his health and safety came first. When we were in the planning stages, none of us really knew how grueling the task ahead would be for a 15-year-old boy in a wheelchair.

When the project was unveiled by the media, the volunteer floodgates opened, and I discovered I had moved the Davidson family into the public spotlight. It's a decision I still ask myself about. Was there any other way to accomplish the task? Was there something else I could have done as a father to showcase the need for genetic research? If there was, it had eluded me.

Things were starting to happen, often faster than I'd imagined they would. What was now called the home team was shifting gears and picking up speed. Former Toronto Maple Leaf captain Darryl Sittler, who had played in London as a junior, joined us as a spokesperson.

On a winter morning early in 1995, Darryl drove from his home outside Buffalo , New York to be at Jesse's high school in London when we announced what Jesse's Journey would be all about. When it was my turn to speak, I was gripped with nervous excitement. I knew that I was committed to seeing this project to its completion, but I also knew the reality that I was almost 50 years old and about to tackle the biggest physical challenge of my life. I remember looking at Jesse as he sat smiling. I couldn't remember when he had changed from a cute little boy to a handsome and confident young man. And then everything became clear again. This was what it was all about. It was for Jesse, and all the kids he represented, who battle just to get through the day. When I began to speak, I told everyone that "I could probably forgive myself if I couldn't complete the job ahead, but I couldn't forgive myself if I didn't go out and try."

Our launch date of May 16th was getting closer. The home team had been making the links that would be needed across the province. Jesse had been given the medical go-ahead and as part of the final preparation I kept pushing myself, walking longer stretches every day, getting myself ready. I still had some serious doubts about my ability to complete this trek, doubts that I'm sure were in the minds of most of our team, doubts they may have whispered to each other, but were kind enough not to share with me.

My parents and Sherene's parents, along with the rest of our families, probably had their misgivings as well, but all of them were there to do whatever they could to see this through. Gradually the idea began to take hold, first in London and then across the province. As the training continued, strangers passing me on the street would stop, shake my hand, and wish us well. It was the beginning of an outpouring of support that would strengthen my resolve and toughen my muscles throughout the months ahead.

If you enjoyed the first chapter of Jesse's Journey-A Canadian Story you can order the 386 page book with 36 colour pages and an interactive CD-ROM with video highlights from both journeys by emailing us at fgct@jessesjourney.com .