The Travel Bug Has Infected This Pompe Warrior

For 25 years, my vacations had always revolved around visiting family. My wife and I would pack up the minivan and take our four boys to Southern California to visit Grandma. We did all the fun things, such as visit amusement parks and the beach. But the thought of traveling to a different state or country never crossed my mind. I was content with our family vacations.

After I was diagnosed with late-onset Pompe disease in November 2018, my mindset shifted away from accumulating things, and I focused more on having adventures and experiences. I could sit on the couch all the time and be depressed, or I could make my life more exciting.

In 2019, my wife and I went on a cruise to Ensenada, Mexico, on the Baja peninsula, with our good friends Gabe and Teresa. We continued going to Los Angeles Angels baseball games with my high school friend Scott and his wife, Maritoni. We also attended Anaheim Ducks hockey games with our friends Louie and Victoria. I was gifted the opportunity to attend two Sweet Sixteen basketball games with the Gonzaga University Bulldogs. And in 2020, I got to see them play at Loyola Marymount University and Pepperdine University.

Attending live sporting events is so much more fun when you can share the experience with others. Even with Pompe disease, I was getting outdoors and enjoying life to the fullest.

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However, I still didn’t have any desire to travel farther away. I feared being on a plane for longer than three hours at a time. At 6-foot-5, I’m a big guy, and I don’t fit well in airplane seats. There’s never enough legroom. And don’t get me started on the in-flight bathrooms! On top of that, I was scared to travel with my muscle weakness disease and kept thinking about all the “what ifs.”

But in 2022, an opportunity arose to travel to Oahu, Hawaii, with a co-worker. I took that leap of faith and haven’t looked back.

Spreading my wings

Over the past four months, I’ve traveled with my teal Fold&Go electric wheelchair — which I call the Dolphinator — on six flights. I flew to Hawaii in October and then to a Miami Dolphins vs. San Francisco 49ers football game in Santa Clara, California, in December.

Now, to start 2023, my wife and I traveled to Cancún, Mexico, for a vacation. I’ve become more confident in my abilities with each trip, knowing what I can and can’t do. Even going through customs and having our bags searched at the airport in a foreign country didn’t shake my confidence.

Dwayne stands in the Caribbean Sea on his Cancún, Mexico, vacation. (Photo by Dwayne Wilson)

We stayed at an all-inclusive resort, the Grand Fiesta Americana Coral Beach, in the northern part of the Hotel Zone. We got upgraded to the eighth floor, which gave us an incredible view of the water.

Overall, the resort was very accessible, but there were a few places where it wasn’t. For example, I had difficulty getting in and out of the elevator without running over my wife’s toes or having the doors close on my legs.

However, the staff was friendly, helpful, and accommodating. They helped carry the Dolphinator down to the beach one night for a fire show and down a few steps in one of the restaurants. One lifeguard even walked beside me as I climbed up a few stairs from the beach, and a waiter kindly brought my drink around to the other side of the pool for me.

Dwayne relaxes in the pool while waiting for a drink, with the Dolphinator — his wheelchair — in the background. (Photo by Dwayne Wilson)

The resort had plenty of ramps, and there was even an accessible platform on the beach. I parked the Dolphinator there and got my feet wet in the sea.

Sometimes I wonder what my life will be like when I’m no longer semiambulatory. I consider how Pompe affects fellow warriors, and I realize I may need a different wheelchair if my muscles weaken to the point where I can’t stand on my own.

But for now, I’ll bask in the joy of standing in the Caribbean Sea, where the water was a beautiful shade of turquoise. It was incredible.

The accessible platform on the beach allows Dwayne to park the Dolphinator and enjoy the sea. (Photo by Dwayne Wilson)

Never in my wildest imagination did I think that I’d go on my bucket list trip to Hawaii and then vacation in Cancún only four months later.

Being diagnosed with a rare disease completely changed my mindset. Now I have a positive outlook and aim to live life to the fullest. I will continue my adventures as I travel to other destinations, all the while building my confidence “On the Road to Pompe.”

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.