Monthly Archives: August 2020

After breakfast at our motel we headed out to our start point west of Pickering and people are already starting to make donations before we get on the road. Late in the morning just as we completed a couple of TV interviews we got caught in a downpour. Lucky for us, we had just reached a Tim Hortons where we were stopping for lunch. The owner of the Tim Hortons was very gracious and said we could have whatever we wanted. I thought that really showed what Canadians are like. We were stuck for about two hours waiting for the rain to stop.

The best donation of the day was from a very muscular Italian construction worker who climbed down from the cab of the backhoe he was working and then climbed up a steep hill to shake hands with Jesse. He was well over a hundred yards away from us when he first saw us moving along the road. He left two huge dump trucks waiting to be loaded while he came to make a donation. This man certainly had his priorities straight and I thought to myself that he is probably a really good dad.

We were very busy on the road and we had great police escorts who put the “Jesse’s Journey” sign right on the side of one of the cruisers and they continually fired off the siren to attract attention. A couple of fire departments sent fire trucks and all-in-all it turned into a very busy and noisy afternoon. By the time we reached Whitby the recognition factor was working well, and our volunteers were collecting money steadily.

We reached our motel at the end of the day and cleaned up before going to dinner. I talked to Sherene on the phone and she told me about the most recent layoffs at television. They were all friends of mine and I felt sad that this is likely to be the case more frequently in the future.

Jesse had received a lot of good wishes today, including a lady who said to Jesse, “There’s a wee kiss that came all the way from Scotland.” She told me she was from Ayr, Scotland, not far from where I was born in Johnstone, Scotland. (Ed’s note: In the picture below, I was two-years-old on the day we arrived in Canada. I was wearing my kilt (which no longer fits) and the hair isn’t quite as curly either!)

And so it went on Day 104

Day # 103 – August 30th, 1995

Our day started with a great breakfast at Sean’s grandmother’s house. Jesse was on the front page of the Toronto Star sports section and in a Toronto Sun picture with Don Cherry and Darryl Sittler and the Stanley Cup at the Hockey Hall of Fame. After doing a couple of early morning radio interviews, I began pushing Jesse east along the Danforth, heading to Pickering. We stopped briefly for a couple of photo ops in Scarborough and at City Hall in Pickering. I don’t remember where we had lunch. In the afternoon there was an unfortunate incident when an older lady who had been waiting to meet Jesse, fell and cut her nose. She had come out to take a picture of Jesse and I think she tripped on the curb at the side of the road. We stopped to make sure she was OK. She was sitting up on the grass and Sean was quick with the first aid kit in attending to her cut nose. She looked up at Jesse and said, “Well Jesse, I guess I have really fallen for you.” When Sean asked the woman if she would like a cold bottle of water?’ she looked up and smiled at Sean and said, “Haven’t you got anything stronger?” Before we moved on, Jesse cheered the lady up with a bit of conversation and an autographed picture in case the picture she was taking didn’t turn out. At the end of the day we all ended up in Jesse’s and Sean’s room at Howard Johnson’s. There was Jesse, Sean, Jesse’s older brother Tyler and me, and somehow it turned into an ‘all guys’ party with pizza and coke. We watched Friends on TV and it was a night of good laughs as well as a hot bath and hair washing for Jesse and for me as well. Sometimes the little things are very satisfying. I am happy that we are pretty well through the Toronto area and heading back to where we always seem to do very well—small town Ontario.

Day 102 – August 29th, 1995

Again, we are up very early to drive east on the QEW heading to CITY-TV. There’s a beautiful sunrise and things got very quiet in the van when Jesse casually mentioned that he had never seen a sunrise. I guess we are all guilty of sometimes just taking the little things, often beautiful things, for granted.

After our interview with CITY-TV’s Ann Rohmer we head to our start point at Jane and Bloor. There’s a service station on the corner and the owner lets us park our vehicles while we wait for the police to arrive. I don’t know what the odds are of this happening, but the owner of the service station tells us that he has a 21-year-old brother with Duchenne. He made a generous donation and so did both of his mechanics.

The police escorts are very helpful, and we get a lot of attention (and donations) when the officers hit their sirens as we make our way through traffic, heading toward downtown Toronto.

When we were heading down Yonge Street, I found it funny when people came up to us and they asked us for money! I was wondering to myself, ‘what’s wrong with this picture?’

We made our way to the Hockey Hall of Fame where Don Cherry and Darryl Sittler were waiting for us along with Chris Simpson, who has arranged a wonderful lunch and a tour of the Hockey Hall of Fame. Jesse gets his picture taken with the Stanley Cup (not the first time he has been in a picture with the Stanley Cup) and he is presented with signed shirts and hats while I do interviews with the Toronto Star and Toronto Sun newspapers.

We eventually made our way back to Yonge and Bloor Streets and continued east across the Danforth Street viaduct, heading to a barbeque at Sean’s grandmother’s house. I made sure that all the volunteers from London had something to eat before they hit the road, heading west back home to London. They have done a great job today.

Before the London group left, I also had a chance to sit down with Debbie Marks to talk about our experiences on the road. She asked what I thought was the most remarkable time. I told her about Hawk Junction in northern Ontario and the night Jesse was asked to come out to a farm and name a newborn horse. We were asked to come to the farm by a lovely lady who had lost a family member to Muscular Dystrophy. I told Debbie that it’s still a very emotional story no matter how many times I tell that story.

When everyone left I called Sherene’s mom and asked her to keep a close eye on Sherene who is really working very hard, and for Sherene, there doesn’t seem to be a break in sight. I really wanted to be near her tonight. This is the part of the journey I didn’t plan on. It’s not going to be easy getting to sleep tonight.

Day 101 – August 28th, 1995.

The day starts at 5:30 as we get Jesse dressed and after a very quick breakfast, there are five us in the van heading into Toronto. (Ed note: The five were Jesse, Road Manager Trish Federkow, Jesse’s attendant Sean Bagshaw, volunteer Don Mortenson from CFPL-TV and me.) After getting some makeup put on we are interviewed by CTV’s Valerie Pringle. The interview is about seven-and-a-half minutes long, which in TV time is a bit like eternity. We think it went well. We also did a CBC interview with Ted Barris. By the time we get back across Toronto and sort out a mix-up with the police, it’s almost 11:00 o’clock in the morning before we get underway. I’m knew I was going to have to pour-to-the-coal to it in terms of walking speed to try to make up for lost time. We have lots of helpers on the road with us, but we didn’t collect much money as traffic is moving very fast. Our route is taking us along Dundas Street. There are fightfighers with us and they have two fire trucks that are escorting us to City Hall in Etobicoke. We sign the city book and receive hats and T-shirts. In the afternoon, we carried on through traffic getting our distance completed and collecting donations when the traffic slowed. Then its back to the motel where I fell asleep and missed supper. I also slept through the fire alarm that went off in the night and brought firefighters who, this time, were here on business! The crew scrambled to get Jesse into his wheelchair and moved after what turned out to be a false alarm. While I was asleep earlier in the evening, Don Mortenson stayed with Jesse and they watched some TV. That was yet another of the thousands of acts of kindness we have experienced. Sean was out measuring tomorrow’s route and getting the oil changed in the van. I don’t know how he keeps it up, walking in the day and taking care of Jesse overnight. I guess being 22 has something to do with it.

Day 100 – August 27th, 1995

After a not so good night, we are up and drive to our start point in Acton. I can’t believe I’m this tired before we even get going. I pick up the pace pretty good and Marilyn Sargeantson, the mayor of Halton Hills, joins us on the road. She stays for lunch when we take a break at 12:30 just west of Brampton. City-TV comes out from Toronto to do an interview and Trish Federkow, our Road Manager, arranges for me to see a doctor in Brampton about my throat which has been feeling pretty ragged for quite some time. I left the road at 3:15 after 22 kilometres to go to Peel Memorial Hospital. The doctor says my throat is very ripped but the vocal cords at OK. He gave me a strong prescription and then it was back to the road where things are still very busy. By the end of the day we have collected quite a bit of money, which in a nice way means more work. Each day the money has to be sorted and counted and deposited. We never leave money on the motorhome. Meanwhile Trish gets laundry organized for the morning. We have to be up at 5:30 to drive into Toronto for an appearance on Canada AM. This is going to be tough on Jesse. I hope we can get him through Toronto OK. I worry about this part. I almost forgot; we ran into some tough hills today which I wasn’t expecting. That didn’t help things. 24 days left to go.

We start day number 99 on the road in Guelph and immediately people are honking and donating. They seem to be in a very good mood. They may have seen us on last nights baseball game on television or maybe they saw us on the front page of today’s Toronto Sun. John Lees, a reporter from CFPL-TV joins us on the road along with his daughter Alene. News Director Derwin Smythe also joins us as we make our way across a covered bridge and into a park in Guelph. At noon hour, Debbie Marks, Jennifer Mosher and Ron Schistad (all co-workers at television) join us and our Journey Coordinator, Ron Calhoun (who worked with Terry Fox and is the man who coined the phrase Marathon of Hope) joins us late the day. We are busy along the road with donations and lots of people honking, waving and yelling out words of encouragement. The police are a bit upset about how many of our people are on the road. We can appreciate the concern and once more we have to remind our volunteers of safety concerns and the need to be careful. It’s hard to dampen enthusiasm when so many people are excited about what they are doing. We clear Acton before the end of the day and I’m finding that my shoulders are very sore. I sleep on the motor home on the way back to Guelph. After dinner at a restaurant in Guelph, Jesse and I along with Sean Bagshaw (Jesse’s helper on the road) leave early to get Jesse a hot bath and a hair wash. I write my journal and get ready for bed. I’m really tired tonight.

Our morning started at Glen Morris Road, west of Cambridge and we made good time getting into Cambridge, but unfortunately very few people seem to know about us. This is the struggle we are going to face the same as everyone faces when they are working to introduce something new. Jesse knows we are in this for the long haul.

For the road crew, Manager Trish Federkow, and Jesse’s helper Sean Bagshaw (Ed’s note: Sean, who was nicknamed ‘Bagger’ is now Dr. Sean Bagshaw and he and his wife Heather live in Edmonton with their two children) and our driver Mike Woodward, it’s going to be another day of shuffling people around and getting everybody to the right place at the right time.

The Big “V” drugstore people offer us lots of drinks and give us a cheque for $600. We push on and stop for lunch at a park near the Knotty Pine Restaurant. Julie Simpson and Glenda Cumming, more friends from the television family in London, bring us sandwiches and cookies along with chocolate cake. I’m a lucky dad. I push Jesse up the hill towards highways 8 and 401. Bob Smith and Ron Schistad want to get some final shots. From here we head into Kitchener where there are girls with flags who are part of a marching band that escorts us to City Hall. The mayor greets us and gives Jesse a replica of a Conestoga wagon. The most amazing thing is a woman, whose name is Mrs. Davidson (not related to us) presents Jesse with a custom handmade blanket. This is very thoughtful. From Kitchener, it’s on to Waterloo and a similar ceremony before we head into Toronto for an appearance at the Blue Jays game at the Skydome. (Later in the year, Jesse and I would be back in Toronto and hearing the pipes and drums of the 48th highlanders as we dropped the puck on opening night at Maple Leaf Gardens.The video link is at the bottom of this posting.)

Our volunteers have worked hard to make this a memorable night and a great opportunity for people to recognize Jesse’s Journey and what Jesse is doing to help move research forward for kids just like him. As I push Jesse around the bases at Skydome, Jesse’s message of courage and determination is playing on the video-tron in centre field. Jesse does a number of television interviews and meets actor Lou Gossett Junior and the Blue Jays give Jesse a signed baseball, before we are taken upstairs to join broadcasters Jerry Howarth and Tom Cheek. Before heading back to Guelph, where we will spend the night, Jesse and I thanked all the volunteers who made the day a success (Gary, Dean, Nick, Kate, Jennifer, Terry and Sherene were all with us today and my apology to anyone I forgot. Some days it’s just all too much to take in.) All these people worked very hard today. Jesse works hard every day.

1995 Journey Skydome-Maple Leaf Gardens

(Ed’s note: On the day we reached Brantford in 1995, it was what I would call a pretty routine day on the road. Things went smoothly even if we didn’t raise a lot of money along the road. When we started our journey back in May, I knew there would be a lot of days like this one—days that required we put in the time, log the distance and do all the things that are necessary when you are trying to launch something new. In the years since that summer when we crossed Ontario, things have changed. Jesse’s Journey has grown to be Canada’s leader in funding research in Duchenne Muscular Dystrophy. Thousands of people have helped make this happen. If you are among that group – I thank you more than you will ever know. And I am well aware that we still have a lot of work to do in making a difference in the lives of boys just like Jesse.

I’m a volunteer at Jesse’s Journey and over the past 25-years, I have spoken on hundreds of occasions and here’s something I have noticed but never shared. There have been thousands of people who have spoken to me privately at these events and they have expressed admiration for what Jesse and I accomplished. While this is nice to hear, we weren’t seeking recognition. This was, and is, a fundraising project. And yet, thousands of these same people have quietly indicated to me that they have never made a donation to Jesse’s Journey.

I know that in the early days it wasn’t easy to make a donation (keep in mind that when Jesse and I crossed Ontario and when I crossed Canada – we did that without a website.) Today there is a website and you can find it at www.jessesjourney.com Making a donation is now very easy to do. And there are lots of options when it comes to what you might want to do. You’ll find them on the website, along with details about the research projects you will be helping to fund. That’s what Jesse’s Journey does — it funds research.

If you have never made a donation before, please give this a thought. And keep this in mind. If everyone in Canada donated a dollar, Jesse’s Journey would be able to fund every Duchenne Muscular Dystrophy project on earth. And when we reach that point and find a treatment and eventually a cure, you can proudly look at Jesse’s Journey and say to yourself, “I helped build that.” Jesse, who gave everything he had to what we were doing in that long, hot summer, would be very proud of you. And so will I.)

We started our day back on the road just east of Paris heading to Brantford. The air temperature is very comfortable and it’s a sunny day and perfect for what we are doing. The road here has very little shoulder, so I am glad we have OPP help in keeping the traffic manageable. Among those who have joined us on the road today is Janice Zolf, a long-time hard-working friend who is the entertainment reporter at Channel 10. When we get to the edge of Brantford, the firefighters join us and do a boot drive for us all the way to our noon hour reception. The noon hour thing is great with lots of ordinary stopping to make a donation. A lady sings “Wind Beneath My Wings” and Jesse and I get to relax a bit while cameraman Ron Schistad and reporter Bob Smith do some interviews. My old friend from public school John Guy stops to say hello and later in the day, Brian Mears, another old public-school chum stops by with his wife Carol who I also went to school with. Brian gives me a cheque and says, “there’s a dollar for every goal I scored against you as a kid.” Lunch is at McDonalds and then we head out toward Cambridge, making it to Glen Morris Road at the end of our day. We head back into Brantford and go to a dinner at the Knights of Columbus Hall. I have an opportunity to talk with Chris Friel, the 27-year-old mayor of Brantford. After dinner I spoke and thanked all the people who volunteered and who helped make the day a success. Jesse was given an autographed Wayne Gretzky picture and the group in Brantford also took care of our accommodation. Bad news is that I have lost my glasses somewhere along the way. Tomorrow it’s Cambridge and Kitchener-Waterloo. It will be one more day and a lot more steps in building what I intend to see through for Jesse and all those boys just like him.

Day 96 – August 23rd, 1995

(Ed’s note: Sometimes we forget things. I forgot to mention that when we were in London, Jesse had a chance to share some time with his friend Colin. Colin has Cerebral Palsy and when Jesse and Colin were in school together, Colin wanted to be a lawyer. Jesse went to bat for Colin and convinced a London Internet company to provide Colin with free internet. Today, Colin has a PhD and is a social worker in Toronto, helping others.)

After a quick breakfast on board the motorhome we made our way up the hill on the west end of Woodstock, passing K102 radio at the bottom of the hill. That’s where my radio career began a lot of years ago, back when the station was called CKOX. It was a fun time back then. At the top of the hill there was another huge crowd of people waiting along Dundas Street, the main street through Woodstock. We slowly made our way to City Hall, stopping to shake a lot of hands and smiling as we saw a lot of familiar faces. Bill Gillespie, an old friend from years gone by reached out to shake hands and said, “Welcome home Jack.” (That’s what I was called in high school.) It’s always a good feeling to know that in a way, we are home. At City Hall, there is a big crowd and lots of kids. Again, Jesse and I spoke to the crowd and I told everyone, especially the kids, that in the future they will be hearing a lot more from Jesse’s Journey. There was a band that escorted us along Dundas Street and in the crowd, there are more friends from high school days. As we make our way along the road, lots of people are telling us we are doing a good job. Through it all, Jesse keeps smiling and nodding and slowly waving his Canadian flag. After passing Eastwood on Highway 2, we push on to Princeton where nothing has been organized. It’s a big disappointment. We get some grilled cheese sandwiches and walk on to Paris where a lot of people seem to have no idea of what we are doing. It’s another disappointment, but we don’t let that get us down. We know there are people who have never heard of Jesse’s Journey. Sticking with what we are doing will make sure that people will remember Jesse’s Journey in the future. At the end of the day we head to Dorothy and Peter’s (sister and brother-in-law) for a barbeque. From there it’s off to Days Inn and bed. The day was pretty good, and we have 28 days left. I hope the next few days are good because Toronto is going to be another big challenge. Jesse is doing his best, knowing that he is going to be missing friends like Colin when we are still on the road during the first month of the school year.

Jesse and John reach London.

Day 95 – Tuesday, August 22nd, 1995

We resumed our journey from where we left off late afternoon on Monday at Shaw Sideroad and pushed on to Thamesford. The weather is nice, Jesse is feeling rested and we are moving quickly as we make the turn at Thamesford, trying to reach Ingersoll before noon. This going to be another day of what seems like a lot of going forward and backward. By late morning the sun is getting high and the heat is starting the build. We meet a lot of people along the road, some of them very special people I have known since high school, even if I haven’t seen them for a very long time. Their words of encouragement like, “Good luck Jack,” mean a lot to me. The road crew is finding their work more manageable after the torrid pace coming through London. We are escorted into Ingersoll with a fire engine and a bag piper. There is a huge crowd that meets us at a downtown park on the main street. After a barbeque and some formal presentations, Jesse and I spoke, before we were picked up and taken back to Talbotville, for a cheque presentation at the Ford plant. Jim Hartford, an old friend, who is Ford’s head of public relations who I know through radio and television is there for the presentation. After the union representative gave Jesse a hat and the Ford management gave me a hat, the crowd laughed when I switched the hats and told them, “I think this is more accurate. Jesse is management. I’m labour.” Then it was back into Ingersoll to pick up the road again and through the afternoon we made our way through Beachville and on to Woodstock and a dinner at New St. Paul’s Church, where we meet Police Chief Dave McKenzie and Mayor John Geoghan. My mom and dad’s friend Fay McFee has obviously worked hard to mobilize Woodstock. Two young boys sing for us after supper and then I do a TV piece with Bob Smith before heading to the Quality Inn where we stay for the night. Jesse had a slightly quieter day today. I was also impressed that Derwin Smythe, the news director at television walked the entire distance. I also found myself thinking about all the people on our team who have worked countless hours in the background to make this journey possible. I was thinking all the way back to before we took those first steps, when my friends Mac Haig and Mike Woodward drove to the Ontario-Manitoba border to start mapping the route Jesse and I would follow. All in all, it’s been another good day. I was relieved that Jesse had a quieter day on the road