Family is the driving force that keeps this Pompe warrior moving forward

Finding motivation to keep going is vital in life with late-onset Pompe disease

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by Dwayne Wilson |

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Back in the day, I had to do a report for school and needed information about a country. I don’t remember which one, but I remember asking my mother for help writing the report. Her response was, “Go grab the Encyclopedia Britannica, the one that starts with the first letter of the country.”

We had two shelves of encyclopedia books, the full set. Whenever I needed to find information or learn about something, that was where I’d look.

Nowadays, I turn to the internet, which has more information on any given topic than one can even comprehend. Sometimes it can be overwhelming.

When I was diagnosed with late-onset Pompe disease, I had no clue what the condition was or what it meant for my future. I started to search the internet to learn more about this rare genetic disease. Soon, though, I was overwhelmed with despair and worry about how severe (or even fatal) Pompe can be. I don’t recommend anyone do that.

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However, I eventually learned that a lot of the information online about Pompe is old and outdated. There have been breakthroughs with clinical trials and treatments, and the medical community and patients continue to learn. Sadly, search engines still display that older information, sometimes above newer knowledge.

I connected with other patients in Facebook support groups to hear more about their experiences living with Pompe. Their stories sounded similar to mine. I realized life wouldn’t be as dreary as I once feared.

Here I was, 50 years old. I’d been living with Pompe disease my whole life, but only received a diagnosis after experiencing some serious symptoms that drove me to see my doctor and seek answers. Now that I had those answers, what would keep me moving forward?

An older man stands between two young men with his arms around them. The one on the left is wearing a green cap and gown and holding a diploma to celebrate his high school graduation. He also has red and white sashes and a lei around his neck. The young man on the right is wearing a black T-shirt and jean shorts, as is the older man in the center.

Dwayne, center, and his sons Devin, left, and Dom, right, celebrate Devin’s graduation from East Valley High School in Spokane, Washington. (Courtesy of Jean Gibson)

Finding motivation in family

My wife, our four boys, my mother-in-law, my mom, and my sister all motivate me on my Pompe journey. I’ve been on what feels like Mr. Toad’s Wild Ride for almost five years now, sometimes facing roadblocks, but I keep moving forward. Everything that lies ahead of me encourages me to keep trekking on.

I recently took a short hiatus from my column for a family vacation. My wife, Jean, and I flew from Southern California to Spokane, Washington, to see all our kiddos.

Our youngest son, Devin, graduated from East Valley High School and completed Washington state’s Running Start program at Eastern Washington University (EWU). Through this effort, he already has two years of college credits under his belt. I’m very proud of him, and that motivates me to keep my Pompe muscles moving. I can’t wait for a return trip when he graduates from EWU.

A man wearing glasses, a black T-shirt, and a baseball cap smiles while sitting on a couch and holding a months-old girl. She's wearing a pink onesie and bib, and her left arm is reaching toward the camera.

Grandpa Dwayne holds Alayna as they spend some quality time together. (Photo by Dwayne Wilson)

Our son Bryan served four years in the Marines while stationed at Camp Pendleton, then moved back to Spokane with his wife, Olivia. They now have a family with two girls. Watching our kids grow up means that I’m getting older, but I’m motivated to be around as long as possible to see them thrive.

I never thought I’d live to see myself become a grandpa, but I did when Adelaide was born. I became a grandpa again last Christmas Day when baby Alayna was born. We were able to see both girls on our family trip.

A man snuggles with a 2-year-old. He's wearing a red T-shirt, baseball cap, and glasses, and the girl, without a shirt, has her head resting on his shoulder.

Adelaide snuggles with her grandpa Dwayne. (Courtesy of Jean Gibson)

This Pompe grandpa was able to hold almost 6-month-old Alayna and snuggle with her. We celebrated Adelaide’s second birthday. All the hugs, cuddles, and love from my family motivate me to keep going for as long as possible.

Our son Dom is still figuring out what he wants to do, and I can’t wait to experience his growth. Family time is much needed on my journey. My tank is now full, and I’m ready for the rest of the summer. More family time and adventures will help me stay motivated “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.


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