ABOVE: Gavin Steel, the only child in the world with Cystic Fibrosis and DiGeorge Syndrome, stands in awe of the NKP 765. The Fort Wayne Railroad Historical Society sponsored his first train ride from Buffalo to Corning, NY this last August.
If you are a nerd like me, you know Superman as being “The Man of Steel.” Since first being introduced by DC Comics in 1938, Superman became an instant sensation in the hearts and minds of children everywhere. Boys and girls all over America were inspired to be just like him: strong, courageous, valiant, and kind. But what does Superman have to do with our beloved 2-8-4 that calls New Haven, Indiana home? It turns out, the planet Krypton sent us a visitor on one of our trips from Buffalo to Corning, New York this August. And his name is Gavin Steel.
To me, East Rochester, NY boy Gavin Steel is a real life superhero. Gavin is the only child in the world to suffer from both Cystic Fibrosis (CF) and DiGeorge Syndrome. Not only does he suffer from these two horrific diseases, Gavin was born with a heart defect and also weighed much, much less than a normal baby should. In fact, his doctors affectionately nicknamed him “tiny baby”. Since his birth, Gavin has been through many major surgeries – more than most of us will go through in our lifetime. Oh, did I mention he is only five years old?
Everyday, Gavin’s parents have to give their son treatments to shake the mucus out of his lungs, which is caused by the CF. Each morning, they hook Gavin up to a machine while he wears a vest, attached by hoses, that make loud noises while it works to clean his lungs out. The process usually takes 20-25 minutes and has to be repeated four times each day. During the treatments, Gavin’s parents like to make the process easier for him by entertaining him with train videos. At only five years old, Gavin is an avid railfan. From Thomas the Tank Engine to watching the real deal go by his house on the CSX, Gavin loves being around trains.
Three years ago, I was involved in a car accident that could very well have ended my life. I was chasing the Pere Marquette 1225 out of Owosso, Michigan and lost control of my vehicle on a dirt road, striking a tree at nearly 50MPH. Not only was it a miracle that I survived, I walked away with only a small piece of glass in my wrist and a few bruises. Later that night, I posted a photo of what was left of my 1995 Nissan Altima to social media and instantly started to receive comments from well-wishers. It is a privilege to meet folks who enjoy my work and it was very encouraging to read the comments people left on my wreckage photo from that night. One of the comments was from Jay Steel, Gavin’s father.
In Jay’s message, he told me about Gavin’s story and how they often play my videos for him when he goes through his treatments. He told me that I needed to be more careful because, “Our family needs you around.” After receiving Jay’s message, I broke down into tears. Here I was, doing this hobby we all love and share, not thinking I would ever accomplish anything great or meaningful in doing so, and this beautiful story of Gavin’s life was introduced to me. I was living life like a normal, healthy teenager, sharing what I love with the world, and yet, somehow, just me being myself touched someone else’s life and helps them get through their days.
While all of this was going on, I started to become more involved with the Fort Wayne Railroad Historical Society. My Great Grandfather was a locomotive fireman on the Southern Railway and I have always had an interest in trains, especially steam. Thanks to Kelly Lynch, our Communications Director, I was inspired to be part of the organization and have helped volunteer in the best way I know: through digital media. This summer, I had a great opportunity to work alongside Lynch and film the 765 all over the country for a future documentary he is producing for the society. I was able to learn more about the Berkshire than ever before and met a lot of amazing people, who spend hours upon hours of their free time to keep our beloved steam engine running.
Thanks to their efforts, kids everywhere are inspired by the 765 – and Gavin is no exception. On 765’s test run between New Haven, IN and Liepsic, OH, I was able to produce a special railfan video on the locomotive for my YouTube Channel. After editing the video and posting it to YouTube, Gavin’s parents played the it for him during his morning treatment and Gavin instantly fell in love with the engine. One thing led to another and I realized that the Steel family lived only about an hour from Buffalo, where the 765 would be running out of in August. Suddenly, a dream was born: I wanted to send “The Boy of Steel,” on his first, real train ride. And what better way to do it than behind Lima’s finest example of superpower steam?
After a lot of planning, the society provided Gavin and his father with two dome-class tickets to ride behind the 765 on the August 1st trip out of Buffalo to Corning, NY. Since the Steel’s lived so close to Buffalo, they invited me to stay at their home instead of a hotel in the area, allowing me to meet “my biggest fan” for the first time. I instantly fell in love with the Steel’s and apparently, they liked me a whole lot, too. Even though Gavin and his family have been through some very hard times, they are some of the nicest people you will ever meet. On Saturday morning, Gavin, his father, and myself departed East Rochester for Buffalo, where the 765 would be boarding. Little did Gavin know, he was not only going to see 765, but ride behind her.
At the yard, Gavin’s face lit up with excitement. Because of his condition, loud noises overload his ear drums, so he had to cover his ears most of the time he was there. Riding on his dad’s shoulders, we walked over to the cab, where senior engineer Rich Melvin stepped down to greet Gavin. “Hello there, little buddy!” Melvin said with a warm smile. “What do you think of the 765?” With a big smile on his face, all Gavin could say was: “YES!” Engineer Melvin then extended his hand while holding a golden ticket and said, “Well, if you really like the 765, how would you like to ride the train today?” Overwhelmed with excitement, Gavin was at a loss for words, awestruck with a smile as big as the Grand Canyon. Rich gave the little boy a big hug and Gavin’s dad thanked engineer Melvin for taking the time to meet his son.
After being handed the golden ticket, the three of us boarded the train for a ride of a lifetime. After departing Buffalo, Gavin and his father walked the train several times over, with Gavin smiling and telling everyone who would listen that, “The engineer gave me this (golden ticket) to ride!” I have never seen someone so excited to be on a train and it meant so much (to me) that we, as a group, were able to give this miracle child his first train ride. You see, the countless hours we put into volunteering on the engine pays off big time, especially when children like Gavin are inspired and educated about the beautiful experience of a scenic, steam-driven train ride.
For myself and the Steel family, 765 is not just a steam locomotive – it is a dream weaver. For about twelve hours, Gavin and his dad lost all conscious knowledge that he suffers from two, painful and unpredictable diseases. The 765 gave them a peace of mind and a thrill that can never really be explained, just acknowledged by all people who share the common passion of steam railroading. Since his train ride, Gavin’s interest in steam trains has grown ten-fold and he frequently asks when the next time will be for the 765 to come to Buffalo.
This December (2015, we sent Gavin and his family on another, special train ride operated by a non-profit called Operation North Pole (ONP). ONP hosts an event with Union Pacific and Metra alike to give kids with special needs and life-threatening illnesses a magical train ride the the “North Pole.” Through a GoFund Me campaign, our subscribers donated money for the purchase of Amtrak tickets for the family to ride the Lakeshore Limited from their hometown to the event.
So, the next time you see 765 out on the mainline, do not think of her as merely a locomotive. Think of her as a dream weaver, who inspires people all over this great country to donate their time, money, and energy to create life-changing memories for people like the Steel family. I look forward to seeing our locomotive back on the mainline next summer and I have no doubt in my mind that Gavin will be trackside once again to witness her in action in the coming future.
Local TV News Story on Gavin’s First Train Ride: