My Story

When my son first was born, there were so many things that were going through my head. How am I going to be as a dad? How am I going to put him through college? How long will I get to enjoy being around him before I die? All of those questions were very trying on me, but the one that concerned me the most was the last one.

My name is Matthew. In June of 2009, my wife and I were blessed with our son Shawn. He was born with birth abnormalities including a multicystic dysplastic kidney and then diagnosed with a Paten Urachus. He had to have surgery at 10 days old to correct the leaking out of his belly button. During that surgery, the doctors noticed something so rare that they had never seen before. Shawn was born with an unprecedented second urethra (I coined it “Shawn’s Urethra” after my son since there has never been a documented case) where his urethra split near the prostate and exited near his anus. Imagine hearing the doctors tell you about the condition that your son had and knowing that, even in the modern day of medicine, they did not know how to help your child.

Since there was very little information about the condition, the doctors needed time to determine how to repair the condition.  At 7 months old, Shawn went in to have an unprecedented surgery to repair this abnormalities. At that time, they also removed the cysts where his kidney should have formed. At 14 months old, he underwent his third surgery to repair another common condition to urological problems, a tethered spine.

At this time, I was 33 years old and had a pretty comfortable life…at least I thought I did. Most of my activities were watching college football and sitting at my desk behind the computer all day. At the first of the year 2010,  the company I work for opened up a fully equipped gym in the office, and I had a bright idea. I knew that now I could not use the, “I am too busy at work to go to the gym,” excuse anymore. I started counting my calories and developed weight training program just to bulk up a little and lose the excess baggage that I was carrying around. After a few weeks I noticed that I was losing minimal weight. I knew that I had to introduce some cardio exercise to my program, so I stopped by the nearest athletic store to pick up a pair of running shoes, and I went the popular running park to start my cardio training. After running about 500 yards, walking the remainder of the way, and recovering for the next 3 days, I nearly gave up.  Before I did, I started to think about my son and all of what he went through and how he never gave up, so I knew I could not either. As week after week went by with me improving my run distances and losing weight, I started to see the change in my body, and I liked it.

After finishing my first 5K and riding high on the emotion, I was sitting in the back yard and talking to my wife and friend Haley about what was next. I was pretty much joking with them when I told them, "Maybe I should complete the Ironman!"  After all, since I was a kid, I had watched the Ironman on TV and determined that it was impossible to achieve for a regular person like me, but my son had showed me that anything is possible with perseverance, resilience, and taking life one day at a time. The joke became a challenge that spring day...

My first goal along the journey was to compete in a sprint triathlon. My workouts went from being 3 days a week to 6 days a week that included biking, swimming, running, and weight training. As I went through the weeks, I really started to see a dramatic change in my body and state of mind. I was becoming more productive at work, I had more energy when I came home to play with my son, and the pounds kept dropping off. I was truly becoming an athlete and was working on being in the best shape of my life.

As I reached the starting line on that early August morning, I started to realize how far I had come. I went from being a couch potato to a triathlete in about 6 months. The gun sounded, and I was hitting the water. I can’t remember much about that day except hearing the sound of cowbells and people cheering us on. Everything else was pretty much a blur until I got to the finish line. As I made the final corner, I reached in the back of my jersey and pulled out one of my son’s pacifiers and put it in my mouth. This was my tribute to him, since he was still recovering from his third surgery. He was truly the inspiration to me changing my life.

We hope that Shawn's surgeries are over.  We feel so blessed to have had such a great support group around us of family and friends, great medical coverage that paid for most of the expensive surgeries, and living so close to the greatest medical centers in the world.  Unfortunately, so many families and children are not as fortunate as we are, and we wanted to know how we could help.

Since congenital anomalies affect 1 in 30 children and is the #1 cause of infant mortality, my wife and I decided that we should start a non-profit called “Shawn's Anomaly” with a mission to provide education, hope, and help to families affected by congenital anomalies. I am not a rich man, so I can’t donate a lot of money to research project, so we decided to use our journey to raise awareness and money to help others.

Today the journey is still underway although I completed my dream to become "Shawn's Ironman." on May 19th, 2012 and I can now say that I one of the less than 1% of the world has ever had the opportunity to cross an Ironman finish line not once, but twice. However my journey is not over. I still and invited to speak at business and organization events all over the world. It has also help launch other endeavors including my move in to politics in 2015 in hope to help influence policy that furthers birth defect research and compassionate care for families affected.

If you are looking for a speaker for your next business or organization, please CONTACT ME. I am always excited to come share our story in H.O.P.E. that it will benefit and inspire others that "Anything Is Possible!"