Day 7: Mississauga to Hamilton

It was the final day of the ride today, and it had come around quickly. Partly because it was a shorter ride than last year - seven days instead of 11 - and partly because so much had happened - and today was no exception. 

Thankfully (from Andrew's perspective) there were fewer kilometres to pedal and the weather was much cooler. He and Max got a later start, taking the smoothly paved Lakeshore Blvd all the way from Mississauga into Burlington where they were to be greeted on stage as part of the Canada Day celebrations at Spencer Smith Park at 2pm. Grandma, Grandpa, Isla and I drove in early to get a parking space and once there we set up camp and met up with Constable Linda Gardner who had - ON HER DAY OFF - come to welcome us 'almost' home with a fantastic picnic lunch. She'd thought of every last thing we (and especially Max) could possibly want. Certainly amazing, but not at all surprising as we have come to know that is just the kind of person she is.

She also revealed a special talent for drumming up a crowd of cheerleaders for the cargo bike as it approached. Anyone in the vicinity was invited to join in, so when they rode up to the park there was a cheer squad to greet them - a great welcome to complete the first leg of the day. 

Our afternoon in Spencer Smith Park was both a chance to relax, and extremely action packed! There were loads of people to talk to including the owners of Urkai and their son (who Max was extremely excited to see), old family friends, a family from Max's school, supporters of the ride who had brought gifts for Max, and of course, MP Karina Gould who was as friendly and happy to see us as ever. To make things even more exciting, in the middle of everything the skies darkened and there was an enormous downpour! I parked Isla's bassinet under a tree and crossed my fingers that she'd remain dry and happy. She did. 

After lunch and lots of chatting, Andrew was called to the stage to make a speech which was a great opportunity to say thank you for all of the support that Burlington had shown us once again. Then before we knew it, it was time to press on to the finish line in Hamilton. Another 600kms had almost come to an end! Andrew and Max set off for Cootes Paradise where we had invited riders from the community to come and join them for the last 4km of the ride. We had no idea how many people would come along, so it was a fantastic surprise for them to see at least 30 bikes gathered for the final stretch to Bayfront Park. 

Meanwhile, a crowd was also gathering at the finishing line. There were friends and family, representatives from the Hamilton Fire Department, Jesse's Journey, Max's school, the loyal MBR supporters from Grandma's tai chi class, and lots of people we didn't know who had come especially to see the end of the ride . They were all there, wearing their Max's Big Ride t-shirts just as they had been the year before, and they were all celebrating the completion of the ride. Amazing! 

At almost 6pm sharp, the bike rounded the corner and zoomed along the path towards the large crowd. Everyone was chanting "go Max go, go Max go", and I'm pretty sure that Isla was crying with emotion and not because it was her witching hour and she wanted to go home. For the second time in two years, Andrew steered the bike across the finish line to the applause of the gathering, and I for one shouted a great big 'woooo!', happy that another Big Ride had been completed. 

So with everything said and done, I think we can call this year's ride another success. We have raised over $100,000 in two years: 75% of that for research and the rest going towards Max's treatment (another massive milestone for us in the last few months). We have increased awareness of DMD. Once again we made headlines in the media all the way from Ottawa back to Hamilton and the number of people aware of our ride and our cause has most definitely grown. We've made some incredible connections. Last year on Canada Day we met Karina Gould, a very warm and approachable young woman who showed an interest in what we were doing. Since then she has been elected to office and has taken our cause all the way to the Prime Minister! On a smaller but no less significant scale for us, we've also met some incredible people from Fire Departments across Ontario. All the way from Parliament Hill to Hamilton we were shown phenomenal support, much of it due to an individual we met in Smiths Falls, Randy Normandin. Like we learned with Christopher Lindsay last year, all it takes is one person to create a meaningful movement and Randy was that person this year. We will always be grateful for everything he did for us. We also met some brilliant women from within the Earl Kitchener school community. A group of formidable mums with a desire to help who coordinated events which raised thousands of dollars for research and significantly boosted the awareness of DMD within our community. Simply fantastic. 

When we got home, despite the ride's success, I felt an undeniable sadness. Last year I was so overwhelmed by everything that had happened that I almost forgot the reason behind the ride, but this year the reason weighed heavily on me. We cheered and laughed and had a fantastic adventure, but the boy we put to bed at night has a fatal disease. He's a force to be reckoned with, but he's sick. Thankfully he still has no idea. Multiple times a day he tells me about his dreams for the future: to drive a car, to be a policeman, to race in the Tour de France, to be a daddy. None of these dreams are likely to be realised with his diagnosis, but we continue to do what we do because we have hope - a fact that Andrew reminds me of every time I feel down. Right now Max is healthy, and therefore the game isn't over. We might just win yet... 

Day 6: Oshawa to Mississauga

90 kms

Today was a big one for Max’s Big Ride, not only in terms of kilometers to travel, but we had some very important engagements lined up in Toronto and Mississauga, and to make sure he could arrive on time Andrew got on the road at around 5am.  He encountered some early excitement on the trail: deer, rabbits, chipmunks, squirrels, and even a beaver were out and about – it was a pity Max was still in bed at the hotel as he would have gotten a kick out of seeing so much wildlife.

The kids and I got a bit of a sleep in, but we still had to be out the door by 9:30am to make sure we beat the big city traffic. Thankfully everybody cooperated and I managed to check out on schedule. On the drive in, Max and I played some pretty complicated games of Lego Ninjago and Dinotrux. Max was in charge of the rules and apparently I had no idea how to play, despite my best efforts.

Our first meeting for the day was at noon at Toronto’s Sugar Beach. PR company Cohn & Wolfe had organized a media gathering and Toronto Mayor, John Tory, was to attend to hear all about the ride and to meet Max. It was wonderful to have an event scheduled and to have had nothing to do with setting it up - and absolutely everything had been taken care of! In addition to the mayor, Cohn & Wolfe had arranged for MP Adam Vaughan to come along and present us with a letter of support from his office, Toronto ice-cream company Booyah Inc donated 50 free ice-cream sandwiches to the crowd (and they were delicious!), Corus Entertainment donated a big bag of awesome swag for Max, newly established Duchenne advocacy group 'Stand for Duchenne' was in attendance, I was given a large stash of MBR postcards to hand out to passers by, and of course there was also print and television media there to capture everything that was going on. If only we had a PR company to help out in every town! 

The excitement built as we all gathered about in the sunshine awaiting the arrival of the mayor. Max's face had been wiped clean and he had received his brief to be nice to 'the king of the city', and when Mr. Tory eventually came into view along the boardwalk, I was told by a friend that he was the guy in the red tie (not that I needed this pointed out to me, of course). It turned out to be a fairly informal engagement. Mayor Tory chatted to Andrew at length, he gave Max an ice cream, he spoke to the members of Stand for Duchenne, and at a couple of points he even chatted to me! He has a three week old grandchild and was fascinated to see Isla and how big she was at just a couple of months older. After about half an hour, it was time for him to go to his next meeting, so our gathering on the beachfront slowly dispersed. Aside from having enjoyed the amazing ice creams, we all felt so pleased that yet another bright light had been shone on our cause and that the event would help to spread the word about Duchenne even further. 

There was no time for rest after the Toronto event and we all hurriedly pushed on to our next destination where an arrival party had been planned by Andrew's co-workers at the University of Toronto, Mississauga. A huge event had been planned the year before, so we weren't sure what to expect this time around, but we were once again awestruck to see a huge gathering of students and staff, as well as a Mississauga Fire Department truck on campus to greet us. Signs had been made, Max was given more presents (we have one seriously spoilt kid on our hands) and the crowd cheered as Andrew and Max rolled in on the cargo bike, bringing their second last day on the road to an end. Best of all for Max was the attention he got from the students when the speeches were over. It's so important to us that he gets a chance to play and have some fun on the ride, and this was a definite highlight for him. He had a large group of people playing frisbee, hide and seek and tag with him - a dream come true for our boy who is always looking for opportunities to burn off some energy. 

So Day 6 was a pretty amazing day for all of us, and we once again felt extremely appreciative of the support we had been shown from those around us. It was a very early night back at the hotel - Andrew had been up since before dawn and tomorrow was the last day of the ride and as usual, we had a lot of exciting things to look forward to. For me it was very hard to believe that it was almost over! 

Day 5: Cobourg to Oshawa

76 kms

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It was up, out the door and in front of the TV cameras this morning. At one point I would have spent some time on my hair and face for that kind of engagement, and I definitely would have selected my most flattering outfit, but these days I'm lucky if I'm dressed at all at that hour of the morning, and as for hair and make-up... well, I have to trust that people understand. 

Andrew did the bulk of the speaking, but I was lucky enough to get a spot alongside Max. He normally never shuts up, but understandably, put a camera in front of him and he a) goes mute, b) turns into a total goof, or c) refuses to participate. This morning we got 'a', followed by 'c', then a touch of 'b'. When I was speaking he was playing with the microphone to create an unusable rustling sound, so I had to repeat my spiel a few times. It sounded natural the first time round, but by the third time, not so much. My best hope now is that nobody I know sees it. 

After the filming was over, feeling confident in our ability to get the MBR show on the road, Andrew took off and I took Max and Isla to breakfast. We have been really lucky with our hotels on this trip, getting free or drastically reduced rooms in almost every town along the way, and in Cobourg we had a nice restaurant connected to our hotel where we had breakfast. After ordering his Rice Crispies, it became clear that Max was pretty smitten with our waitress, who was definitely going over and above to deliver good service. After completing the 'Kiddie Sudoku' on his placemat, he said, 'she's a really nice person, isn't she mum'. Good judge of character my boy. 

We headed back to our room, feeling relatively calm, and then came the text from Andrew. "I've broken a spoke." Plans to pack up our room went out the window, and I jumped on the phone to try to find a bicycle repair shop en route. A super helpful guy tried hard to give me a lead, but all roads led to nowhere and before I knew it, it was time to check out and we still had nothing lined up. We drove to Newcastle, today's halfway point and a beautiful spot on the lake, but instead of our usual picnic, today we loaded the bike into the van and headed into Bowmanville to the nearest bike shop we could find. 

Unfortunately, we were unable to find a replacement spoke, so the decision was made to ride on. The wheel was still true, and our feeling was that it would hold for the rest of the journey. Also, and perhaps primarily, we had no choice! We got back on the road and Andrew pressed on to meet up with yet another fire department on the road in Oshawa. He and Max were escorted across town for about 5kms by another friendly fire fighting crew, before parting ways and heading on to our hotel in Whitby.

So despite finding our feet as far as routine goes, there is never a dull moment on this road trip and you never know what's around the corner. Tomorrow we ride on to Toronto where there are some exciting plans afoot. Stay tuned! 

 

Day 4: Belleville to Cobourg

86 kms

 Team MBR 2016. Photo by Cathy Koop.

Team MBR 2016. Photo by Cathy Koop.

Team MBR hit our stride today. We perfected the routine of Andrew hitting the road early sans Max, and then meeting for lunch and the transfer of our boy at the half way point. The weather had cooled down, the wind had dropped (a bit), and things were generally where they were supposed to be, when they were supposed to be. Go team! 

Along for the ride today was Max's Big Ride supporter and Tweed resident (a winning combination in our eyes) Will Austin. It was awesome to see him again, and to learn that he'd be joining the ride all the way to Cobourg - the whole 86 kms! He rode Max's Big Ride out of town last year, and since then had increased his training on the bike - even taking part in the Ride to Conquer Cancer - so he was as fit as a fiddle and ready to last the entire distance. 

Also, just as he'd predicted, Andrew had 'ridden himself into form' (just like the Tour de France riders he tells me) and was feeling great. Personally, I'm pretty sure it was the cooler forecast which was making him feel so good, but either way, things were looking up as they hit the road. 

We caught up with the riders for lunch in Brighton, and once again we found a picturesque park to enjoy a picnic. Will and I took turns reading Max his new Batman book while everybody fuelled up ready for the afternoon shift. 

It was a beautiful ride from Brighton into Cobourg - apple orchards and strawberry fields, pastures of yellow stuff (not sure what it was), shady trees and direct views of the waterfront. Storm clouds loomed - and even rained upon the riders - but they considered it a welcome gift as it cooled them off as they approached town. Even Max didn't complain about getting wet, but Grandma and Grandpa still doubled back to deliver his cover. He can never say that he's not given first class treatment by the support crew.

Waiting at the hotel for the bikes to ride in were two media teams - Northumberland News and Northumberland Today. Andrew did some interviews, we coaxed Max into having his photo taken, and said our goodbyes to Will just as the skies opened up once again. We had our usual picnic for dinner in our room (still enjoying some of the delicious treats delivered by the Lindsays) and got the kids bathed and into bed at a reasonable time. I told you we were hitting our stride! 

Thankfully we're lucky enough to have two pretty chilled out kids along for this adventure. Max is five, so he's definitely challenging at times and he does try to assert himself at some inopportune moments, but he's a sweet, funny and affectionate boy who is great fun to be with for the most part. Isla is also proving to be a winner. This trip is trying for the adults, let alone a 3-month old who has no idea what's going on, but she's hanging in there, sleeping well, and doling out the gummy smiles much more than she is crying. I'm pretty sure I won't be returning either of them any time soon. 

Day 3: Kingston to Belleville

 The Lindsays!

The Lindsays!

89 kms

Memories of last year’s ride, and how chaotic things can get, came flooding back this morning. Once again Andrew decided to start the day without Max to give us the opportunity to have a sleep in and a decent breakfast while he pumped out some early kilometers on the bike, and while I could definitely see the merits of that, it also converted my morning to one of mild bedlam to one that contained moments of pure anarchy.

I hate to use the term ‘disabled’ to describe Max – mainly because at this point he really isn’t. When he was diagnosed his doctor told us that we were in the ‘honeymoon period’ of the disease, which at the time made me want to scream. How could the absolute worst time of our lives be referred to as something as dreamy sounding as a honeymoon?  Of course I got her point, but it infuriated me at the time, and her words still haunt me on a regular basis – a reminder that we have a rocky road and tough times ahead. So while Max has DMD, at this point he’s a pretty regular 5-year old which means he’s a funny and delightful little human, but he can also be a complete nut-bag who is extremely difficult to control.

So while Andrew was battling the elements heading towards Napanee for lunch, I was in the hotel room battling Max. He’d seen the hotel gym from the pool the night before, and he had his heart set on going to check it out before we left. ‘Mumma, can we go to use the exercise equipment now? I want to go to use the exercise equipment now. Can we go and use the exercise equipment now? NOW?’ Of course I was going to take him, but a number of things were taking priority over a trip to the gym. Calling the hospital in London to check on the status of his Translarna supply (I had to leave a message), calling two reporters in Belleville to let them know the details of our arrival that day, getting an unhappy Isla off to sleep while convincing Max to bounce on the other bed while I did so, importing photos to the computer to free up space on the memory card, writing yesterday’s blog (it's pretty brief - now you know why), mixing up his daily supply of medication, packing our bags, feeding Isla who only naps for 30 mins at a time, tracking Andrew’s whereabouts so I knew what time to leave the hotel, charging up our electronics to get us through the day – and all of this to the soundtrack of Max’s increasingly urgent requests to go to the gym. Thank god Grandma and Grandpa were taking care of the food, drinks and laundry or I may have lost my mind. 

I eventually got things organized to a point that we could leave our room and go to the mystical gym. Max ran all the way there, leaping all over the patterned carpet in a way that made me sure he was going to trip (he didn’t), and was ecstatic to finally arrive at the place of his Monday morning dreams. In we went. He looked around, held a 2-kilo weight above his head, stood on the elliptical machine for a minute, and was satisfied. Seriously. 

Of course, mixed in with all the madness were moments of fun, and throughout all of it, for hours and hours in the heat and the wind, Andrew was out there on the bike. As crazy as things behind the scenes can get, I wouldn’t trade places with him for a second. Physically I wouldn’t stand a chance! 

So anyway, we finally got packed up and drove to meet Andrew for lunch. We had a terrific picnic in a beautiful park in Napanee, and from there Max joined Andrew on the bike. Unfortunately the wind had blown up again and parted the clouds meaning it was another hot and difficult ride into Belleville. He rode in at about 5.30 where we met a journalist, a supporter of the ride wearing an MBR t-shirt, and the best thing of all... the Lindsays! 

Chris Lindsay was the man behind our phenomenal arrival in Tweed last year, and this year he and his beautiful family plus a friend of Riley's, had come out to greet us once again. It was really great to see them all - Tristan and Chris unchanged, the kids just a little bit more grown up - and we chatted about things that were happening on the ride and in our lives. Of course they couldn't just come down to say hi. They had brought with them signs for Max, a generous donation, and an amazing picnic dinner with enough food to feed an army! My mind is continually blown by the generosity of some people, and the Lindsays are among the most generous and thoughtful I've ever met. 

It was back to the hotel after dinner, and another early night for an exhausted Andrew. He has been keeping a close eye on the weather forecast and the percentage of the route completed, and last night he was happy to report cooler temps and the halfway point reached. Hooray! 

Day 2: Smiths Falls to Kingston

 Highway 15

Highway 15

100.1 kms

If Day 1 was hot, Day 2 was an absolute scorcher. The high humidity, strong headwinds, and hilly roads prompted Andrew to get on the bike early and get a few miles out of the way before the heat of the day set in, with the idea that he’d have an early finish. Max stayed at the hotel with me for the morning so I could pester him into eating a few mouthfuls of breakfast, and we caught up with the bike on Highway 15. It’s a busy road with no shade, and Andrew already looked hot and tired when we drove up behind him at around 10.30am. Still, we made the exchange and Max happily jumped in the box for the second day of his big ride.

We planned to reconvene for lunch an hour or so later, but a few more minutes in the car and Isla announced in the only way she knows how that she’d had enough and wanted to push on to the hotel. I obeyed her wishes and headed on to Kingston, relieved that Grandma and Grandpa were there to take care of Max and Andrew. Thankfully I’d given them Max’s lunchtime supply of his Translarna – making sure he takes his medication three times a day is crucial.

My vision for the afternoon was to settle into the hotel, organize something for dinner, then head to the outlet mall that was just two minutes walk from our hotel for a spot of shopping. Unfortunately Max’s Big Ride had other plans for me. An emergency call came in from Andrew at about 3:30pm asking me to come and collect Max. He’d had enough and Andrew wanted to spare him unnecessary hours in the heat, so I jumped in the car and went to his rescue. We also offered to pick up Andrew and the bike, but unsurprisingly, he would have none of it.

We were all worried about Andrew. The weather really was being uncooperative and although he'd never admit it, he was struggling. There was never a question in my mind about whether he'd make it - it was more what condition he'd be in when it was all over. Andrew is such a sturdy husband. Where I'm pessimistic and doubtful, he's all sunshine and positivity. I am the first one to see problems (usually before they arise), and he only sees the upside of any situation. Physically he's a force. He's the type of guy who'll break a zipper before accepting that it's stuck, and when it comes to something like Max's Big Ride, he'll just get the job done - and enjoy it to boot. But today I saw his legs buckle as he stepped out of the van. Andrew's legs never buckle! It was a shock and a big realisation for me that it really was tough going out there. 

After hours more battling the heat and the wind, at 6pm a puffed out Andrew pedaled into the hotel parking lot with Grandma and Grandpa following close behind in the van – they’d decided to escort him in for moral support and if it was ever needed, today was the day. He’d been on the road for 10 hours and had ridden just over 100kms - so much for an early finish!

After dinner we were all ready for bed - everyone except Max that is. He insisted that I take him to the hotel pool for a swim before bed. I am constantly watching Max for signs of slowing down, but at this point I really can’t see any. When the rest of us are ready for a cool drink and a lie down, Max is running in circles making noises like a siren and jumping all over his sister while I’m trying to put her to sleep. He might drive us a little crazy, but I’ll take his boundless energy over the alternative any day. 

 Lunch in the shade after a hot morning. 

Lunch in the shade after a hot morning. 

Day 1: Ottawa to Smiths Falls

85 kms

As we got ready for the MBR launch yesterday morning, I think we were all aware that we had something to compare this year’s ride to which, given last year’s success, added a little bit of pressure. The comparisons began on Parliament Hill. Last year, rainy. This year, hot and sunny. Last year, lots of print and television media. This year, one media outlet. Last year, no fire trucks. This year, two fire trucks. Last year, white t-shirts. This year, radioactive yellow t-shirts. Both years, friends and friendly faces assembled to wish us well. Both years, very exciting.

In lots of ways we were much better prepared for what lay ahead this time around. Andrew was familiar with the trail out of Ottawa and he knew to have lots of stories prepared to entertain Max, and the support crew knew what we needed to bring and what could be left behind. Mistakes were made – not enough sunscreen on Andrew and Max’s knees – but for the most part, MBR 2.0 was looking like a pretty well oiled machine.

The ride to Stittsville for lunch was hot and humid, but Andrew and Max made good time and were greeted by a reporter from the Stittsville News, and Ottawa Fire Services’ ‘Station 46’ who we recognized from last year. Also there was a friend of a friend with her little boy (who I kind of already knew from Facebook stalking – sorry Stephanie!), as well as another friend of the family who dropped down to say hello. It was very cool to have these people take the time to wish us well, and to know that the word about the ride is slowly getting out there.

Max’s Big Ride had also made page two of the Ottawa Citizen that morning, so on the trail Andrew was pulled over a number of times to collect donations, and lots of people were shouting out words of encouragement and recognition which was a definite boost to his spirits. It was a hideously hot and windy day and he had to pedal the heavy bike 85 long kilometers.

After lunch and a play, Andrew and Max pushed on and the support crew took off to our hotel in Smiths Falls. About half way there I caught myself thinking that the drive was a little long I was beginning to feel a little bored, and then the implication of that for poor Andrew hit me hard. It’s a helpless feeling knowing he’s out there working so hard in the heat and that there is nothing anyone can do to help him.

Going along for the ride last year was not exactly relaxing, but adding a 3-month old baby to the mix has definitely upped the ante. Isla is a laid back little thing, but a long day of driving in the heat with minimal time to kick back and ponder her hands took its toll yesterday and by the time we got to Dairy Queen for the arrival of the bike, she had just about had enough. As we stood waiting with a journalist from Discover Smiths Falls, and tracking their whereabouts on Find My Friends, we listened to the unsettling background noise of Isla’s cries. I hoped this wouldn't become a theme of the ride. 

As they came into view though, things took a more positive turn. Flashing lights and sirens heralded the arrival of Andrew who was being escorted between two fire trucks – our third fire department of the day! – but where was Max? In the passenger seat of the truck is where – grinning and waving and looking rather pleased with himself.

If we thought that we’d met some great people before, Randy, Josh and Julia from the Smiths Falls Fire Department were serious contenders for best people ever (not that we’re into comparing the greatness of people or anything). They were genuinely kind-hearted people who had gone to a lot of trouble to organize a memorable arrival for Max, and like last year’s amazing people, THEY were thanking US for letting them be a part of the event. They gave us a generous donation and showered us with gifts, including a real, personalized fire fighter helmet for Max, and left us with hugs, hand shakes and well wishes. It’s very emotional to encounter such wonderful people who are willing to go so far out of their way for a family they have never met, and it’s a sobering reminder of the reason we’re doing the ride and the response that this can trigger in others. I’m sure I wasn’t the only one close to tears when I saw all they’d done.

And if that wasn’t a great enough end to the day, a family friend had invited us to dinner at her nearby cottage where we enjoyed a delicious dinner with a spectacular view, and Max got to unwind on the trampoline they had set up on the lake. Yep, ON the lake. It was completely amazing.

So a different first day to last year – a slightly more subdued departure, but an end to the day that we’ll never forget. As Grandpa said, ‘different highs and different lows’, and I’m sure that will be our experience throughout the ride. 

A Good Day

It’s bedtime in Ottawa, and the house we are staying in is full of smiles. Max had a great day because he ate a popsicle on Parliament Hill and got to play with his friend Spencer after dinner, and the rest of us had a great day because of the connections we made. Yep, once again, it has been proven that the best thing about doing Max’s Big Ride is the people we are lucky enough to meet and spend time with, and today we spent time with some pretty amazing individuals.

First up was a visit to the University of Ottawa where we met Dr. Bernard Jasmin and his team who are working on treatments for a number of neuromuscular diseases, including Duchenne. On the way to the laboratory Max revealed that he didn’t know that labs existed in real life, but by the time we left he was pretty sure he wanted to be a scientist when he grows up. And it was pretty cool. Lots of young folk in white coats, microscopes and test tubes about the place, and we heard lots about the terrific work happening within the lab to bring treatments to patients who are in desperate need. Admittedly, I did miss a chunk of the tour because I had to take Max to the washroom which took forever, and I also had to feed Isla, but there were a few clear messages that were conveyed to us: Ottawa is a recognized leader in the field of neuromuscular research; there is a high degree of collaboration between teams which means that research dollars get a much greater bang for their buck as discoveries are readily shared thereby expanding their value; and there is increased collaboration between research and clinical teams to help move treatments more quickly from the lab to the patient – something that we were particularly interested to hear about. So it was of great value to us to see firsthand the work that our fundraising dollars pay for, and I hope it was of value to the lab staff to meet a family on the receiving end of all their hard work.

From the university, we sped off to an engagement at Parliament Hill with Burlington MP, Karina Gould. We were initially invited to a gathering with MPs from the Health Committee and Youth Committee where ice cream was to be served, and we were to attend Question Time where Karina was going to speak about Max’s Big Ride to the house. Unfortunately Parliament rose a week early so this was cancelled, but in no way was our visit disappointing.

We arrived a little disheveled after a minor parking incident involving our large van and a small underground parking lot, and Max may or may not have been eating McDonald’s fries to stave off his h-anger, however we pulled ourselves together in time to be greeted on the Hill by Karina and a member of her team who had a stash of popsicles for everyone to enjoy. We chatted and happily ate them while we had our photos professionally taken in front of the Peace Tower, and it was at this point that I wished I had done my hair and popped a bit of lippy on. Then we exchanged gifts. We gave Karina a Max’s Big Ride t-shirt and cheekily threw an extra one in for Justin Trudeau because why not, and she gave us something amazing. An embossed certificate from Karina’s office acknowledging Max for the Big Ride, and A SIGNED LETTER FROM PRIME MINISTER JUSTIN TRUDEAU congratulating Max for having the courage to lead the ride and the bravery to search for a cure for Duchenne. It was extremely mind blowing for all of us to receive such an incredible acknowledgement from the PM, and for sure, I admit that part of the excitement for me was having such a handsome, progressive man with such a lovely head of hair acknowledge the work of my husband and my son, but the real thrill was knowing that the leader of Canada has recognised our cause. This really does mean the world and we are extremely grateful for whatever work Karina did behind the scenes to make that happen.

From there we headed inside Centre Block where Karina gave us a personal tour of the building. We got to go inside the House of Commons where Max and Isla sat in the Prime Minister’s chair, and we all went up the Peace Tower where we got a pretty great view of Ottawa and its surrounds. It was a really special experience and one that we’ll all remember for… well… ever. 

On your marks, get set...

Now that Max is five, it's hard to remember what the mum of a small baby gets up to on a daily basis, but from memory it involves coffee, dishes, Netflix, nursing, laundry, baby-gazing, meal planning, and a lot of time spent pounding the pavement trying to get your little one to nap. With our daughter Isla now at three months of age, my days include all of the above, plus a healthy portion of planning for Max's Big Ride. Today is the day before before we hit the road for Ottawa to undertake MBR 2.0, and our house is an absolute disaster. My to do list is a mile long, and even though I'm tired, I can already see that we'll be up late putting in place a few dozen last minute arrangements before we head off early tomorrow morning. 

I can't really describe a typical day, because each day holds something different, but today - so far - has looked like this: 

1. Rush out the door for school drop off, making sure to send Max in with thank you gifts for his teachers because it's his last day of kindergarten. LAST DAY OF KINDERGARTEN! My boy is growing up. 

2. Walk to a friend's house for coffee. I've recently met some truly wonderful people within our local community, so a chance to sit and chat before getting some work done was a welcome addition to the first half of my day. 

3. Head home and feed Isla. 

4. Empty the car of water bottles, crayons, baseballs, hats and a mountain of garbage in preparation for tomorrow's big drive.

5. Call the hospital in London to make sure that the request for Max's next supply of Translarna is underway... it isn't.  

6. Do three loads of laundry.

7. Drop off ten Max's Big Ride t-shirts to Dairy Queen. Dairy Queen have come on board as a sponsor of our ride this year and in addition to their generous donation to Jesse's Journey, on Canada Day they will collect donations and wear MBR shirts to help raise awareness for Duchenne. Yay Dairy Queen! 

8. Plant a few flowers in the front garden while Isla naps. 

9. Pull out the suitcases and start to gather together bags of snacks, toys, diapers, medication, sunscreen and other essentials for our trip. 

10. Feed Isla. 

11. Meet Andrew after he picks up Max early from school and go to a meeting at MPP Andrea Horwath's office in Hamilton. Andrea is the leader of the Ontario New Democratic Party and was kind enough to invite us to discuss the ride, as well as some of the challenges we are facing in gaining access to Max's treatment. It was great to meet her and some of her team, and to know that we are now on her radar! 

12. Feed Isla. 

13. Realise I've made a mistake on one of the Max's Big Ride t-shirt orders, and hope and pray like crazy that it is the only one. 

14. Catch up on some emails, one of which is a letter from the Federal Minister of Health, The Honourable Jane Philpott, wishing us all the best for our ride. 

15. Stuff my face with yoghurt and Triscuits because I forgot to eat lunch and I'm starving. 

16. Fold and put away three loads of laundry. 

17. Watch Isla and note that she is now able to grasp a toy and shove it in her mouth - a skill that is bound to come in handy now that I suspect she is teething. 

18. Email our contact at the City of Hamilton to finalise arrangements and request parking passes for our arrival at Bayfront Park on Canada Day. 

19. Sit with Max and read through his kinder journal, and admire the framed gift his classmates made to wish him well on the ride. I smiled as he happily told me about the hugs he got from a few of his friends when he left for the day. 

20. Read up about a new treatment for Duchenne being carried out at the University of Toronto and forward the article to Andrew for us to discuss later. 

21. Pull some lasagna from the freezer and start thinking about what I might throw in a salad to go with it. 

22. Receive an invitation to a research lab in Ottawa that is investigating utrophin as a treatment for DMD. We'll get to tour the lab and gain an insight to this promising avenue of research. 

UPDATE: 

It is now after 10pm and since this afternoon there has been no slowing down. Andrew deleted the entire route map after dinner and had to re-key the entire thing, he's about to head out on the cargo bike and stick up posters for the ride around the neighbourhood, we've received a shot list of things to film for the documentary that is being made about this year's ride, I've constructed piles of our belongings in various locations around the house ready to stuff into bags tomorrow, and my to do list is only half checked off. I'd like to think that things will settle down after today, but my gut (and experience) tells me that's very unlikely. It will be a relief to hit the road tomorrow so I can quit stressing about things at home and shift my focus to the next phase of the ride... Ottawa! 

 

 

Translarna: the very real benefits of research

A little over three months ago, Andrew and I walked away from the London Health Sciences Centre holding a brown paper bag containing six boxes of Translarna. Also known as ataluren, Translarna is the first treatment of its kind for Duchenne muscular dystrophy, and Max is one of the lucky boys who is eligible to take it. I say he's lucky, but like 13% of boys with DMD, Max has a nonsense mutation on the dystrophin gene: one small mistake in his genetic make up which means that any dystrophin his little body tries to make is discarded before it's able to be used, causing his muscles to slowly weaken and for our beautiful boy to waste away while we watch on, unable to do anything to help him. 

When you're told that your child has a fatal disease that has no cure, your world falls to pieces. After crying rivers of tears and experiencing the worst heartache imaginable, I became fixated on learning about treatments and I fantasized about the day a cure would be found, but it didn't take me long to make the painful discovery that the research process is frustratingly slow, and that there was a very real possibility that nothing would be developed in time to make a difference for Max. 

After a couple of years of coming to terms with having this disease in our lives, I almost didn't dare to imagine that there could be some hope for Max. The disappointment would be too much to handle if I let myself think he might actually beat this thing, and then I had to experience the overwhelming grief all over again. But there was one treatment, Translarna, that was close. In fact, it was approved in Europe and some boys were actually taking it and reporting positive results. When we heard about Health Canada's Special Access Program which would allow us to apply for access to the drug, it seemed too good to be true, and then when we applied and were approved and had the boxes in our possession, it was a situation I hadn't even let myself dream about. But would it work? 

Well, we are just over three months down the road and I'm pleased to report that we are noticing a definite improvement in Max's abilities. He's able to climb to the top of the playground equipment without any help; he can sometimes go up and down stairs without holding onto the bannister; he's walking longer distances without holding our hands, and this morning he RAN all the way to school without falling over! He recently started soccer lessons and he hasn't fallen down on the bumpy field, and both his school teacher and Beaver Scout leader have commented that he's able to do things he wasn't able to do a few months ago. And all of this with no side effects!

For a kid without DMD, these feats aren't significant or in any way noteworthy, but for a boy with Duchenne they're huge. It means he can keep up with his friends for longer. It means he can be included in sports. It means we can go on outings unhindered by an extra set of wheels for when his legs get tired. And last night, when it was raining, it meant we could run to the car to avoid getting wet! Of course he's still weaker than the average 5 year old. An unexpected bump will send him sprawling, his legs are covered in scrapes and bruises, and he tires easily. I still call out to him to be careful when he runs, and I'm terrified he'll fall when he climbs on the monkey bars. But now, beneath all the fear and worry is a very small glimmer of hope that just maybe we will beat this thing. The landscape is changing. Just a few years ago there were no treatments, but now there is one, and there will be more, and with each of them comes a little more hope that Max's future will be brighter. 

Max's Big Ride is raising money for research, and in just one year I feel reassured that our efforts are completely worthwhile. The boxes of Translarna and the changes in Max are proof of that, and while it's not a cure, this drug has bought us some time and that gives us great motivation for continuing down the path we are on.