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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

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My NYC Marathon Experience

Hello and welcome back! This is my 50th blog post! Seems fitting that I am writing the 50th blog post talking about Jamie and I completing our 2nd world majors marathon together, the coveted 50th NYC marathon, and guess what?! We won first place for the duo bike competition! Not at all why we were doing it, but kind of icing on the cake! Speaking of icing on the cake, our son Luke who is 18 ran the marathon too, placing 3rd in his age group. His first marathon ever! Another fun fact before I take you on the journey of the day, is that Jamie and I were the first ever duo team to run the NYC marathon for MDA’s Team Momentum! 

All smiles!

What you see is Jamie pushing me running. What you don’t see is that I don’t just spend the entire ride cozied up with a hot cocoa. I have work to do. I manage all of his nutrition for the run/race, refill water bottles while he’s moving which takes practice so I don’t soak myself and freeze to death! I constantly look for hazards on the path, or in the case of a large marathon it’s a constant lookout for me to make sure Jamie isn’t getting too close to someone with the bike’s front wheel and causing an accident. Not to mention acknowledging the large crowds cheering for us, smiling and waving for 3 1/2 hours nonstop is tiring! If he’s feeling discouraged I try to boost his morale. I also try to capture as much as I can through photos and videos to take people on the journey with us. I had several people thank me for taking them live several times during the marathon and our training. They said it was like they were running it too!

This time I also managed Luke’s water and nutrition during the race. So, needless to say, my hands were literally full! I was a little nervous because Luke and I didn’t really have a rhythm down like Jamie and I had perfected over the last several months of training, but it all worked out ok!

The morning of the marathon the alarm went off at 3:30, but I was already awake and had been since 1:30. I guess it was the excitement mixed with nerves and anxiety that kept me from sleeping. I had a little coffee, but I learned from our Chicago marathon that I didn’t want to overdo the liquids because a bathroom stop can kill your finishing time. Jamie and I got all ready and gathered everything we had prepared the night before and headed downstairs to walk a mile on the streets of NYC to get to our bus that would take us to the start line. We traveled with the AWD group (athletes with disabilities). When we arrived at our holding village we saw lots of people with disabilities, and I instantly felt right at home. I was in awe of all those participating with disabilities in so many different ways. 

We were at the holding village for about 2 hours. We had a little bite to eat and got all set up. Our bike had been delivered to the village the day before, so we found it and also met up with another gentleman who we had met at the Chicago Marathon who pushes a duo bike as well. It was great to see a familiar face, and we also met lots of wonderful new participants. 

Athletes with Disabilities Village

Going into this, our biggest source of anxiety was how we were going to meet up with Luke. You see, he wasn’t able to travel with the AWD group. They had strict guidelines due to COVID, and just couldn’t allow him to be with us. Luckily our MDA Team Momentum teammates took great care of him until we were able to meet up. The solution and plan we had was to hang back from our original starting wave because Luke was in the wave behind ours. We were told by several race officials this would be ok. So we were waiting and communicating with Luke when suddenly a man working as a volunteer said to us, “why haven’t you started yet?” We told him, and he said, it was a safety hazard for us to start with thousands of people. For them and us. He said you need to get started right away! He generously allowed Jamie to quickly go and find Luke so he could start with us. I frantically called Luke and we were miraculously able to find him in a sea of thousands, and we headed to the start line. Normally, you would start a marathon amongst thousands of other runners. Due to the miscommunication about being able to start in the wave behind us, the three of us had our own private start! It was unreal. Definitely a moment we will never forget. 

Heading to the start line!

During the 2019 Chicago marathon a few minutes after we started I felt a feeling I hadn’t ever felt. I was numb and tingly at the same time, a little nauseous and also super energized. It was an adrenaline rush. I had never felt that before. The same thing happened during this marathon, but it wasn’t until a little later in the race. The crowds were very lively and interactive, and as exciting as it was, I had those same feelings. I also felt a little dizzy, but I didn’t mention it to Jamie because well, he was busy running a marathon! 

Luke just bounced along like it was a Sunday jog in the park. I think he was shocked at how much the crowd cheered as we’d come by and yell “go Amy and Jamie!” That is one of the main reasons we have our name on the bike. It really helps when we are running to have people cheering us on by name.


This marathon was different as far as difficultly. There were far more hills than Chicago. We went over three different bridges, some with mile+long inclines, including the bridge at the very start. Jamie and I had trained together for months, but these hills were brutal. Jamie understandably struggled. Luke and I encouraged him, and there were times he felt he couldn’t go on. I felt so guilty, even though I know he didn’t want me to, I felt responsible. He struggled up to the very end, but the crowds and especially Luke kept him going, saying “come on dad, we’ve got this, we are almost there!!” Luke wanted to help push me and offered many times, but that is not allowed per race rules. 

Luke encouraging his dad 💚

Finally the finish line was visible. That was such a sense of relief to me. That Jamie wouldn’t have to go much longer. As we approached the finish line, my beautiful son reached down and grabbed my hand and lifted it up as we crossed. We had done it! As soon as we crossed the finish I burst into tears. The three of us just stopped and hugged and soaked in that extremely special moment. It was truly beautiful. Equally beautiful was knowing my younger son Jack was there waiting for our finish after cheering us on the whole way. 





We did it!! 3:26 finish time! 

We went a few steps further, and I was then handed my own finishing medal for completing the NYC marathon with as many congratulations as any other runner. Some may say I don’t deserve such a coveted award that so many work so hard for. I would have to disagree. We were a team, and although I didn’t earn the medal in exactly the same way, I humbly courageously earned it in a way that most there never will. Living with a disability, you kind of have to run your own marathon everyday. It’s not really a choice. I remember in Chicago being surprised that I too got a bib number and a finisher medal. I’m used to watching others win awards, not receiving them myself. 

My finisher medal!

Reuniting with Jack after the race made the whole experience complete. Never in my wildest dreams would I have thought I would have two world major marathons under my belt because I’ve never run in my life. Oddly, even though I’ve never run, I’ve always felt this connection with running. I feel like if I could run I’d be one heck of a runner. I think God opens doors we don’t expect, helps us to see our story and how it can be so beautiful if you allow it to be. If you have a passion for something, but feel you can’t do it, maybe look at it through a different lens. I’m forever thankful for ALL who supported us on this amazing journey. Together we fight! 💚💚


P.S. Probably the most important part of this story is that we raised over $21,000 in the fight against muscular dystrophy! Thank you to all who donated!! You are helping to make a difference in the lives of those living with neuromuscular disease and ALS. You give us HOPE

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