Cruising with Pompe

My name is Dwayne Wilson, I am 51 years old and from the United States. I live in Southern California in Irvine which is about 20 minutes South of Disneyland. I was diagnosed with Pompe Disease last year on Nov. 19th at UC Irvine Medical & ALS Center in Orange, CA by Dr.Tahseen Mozaffar. I was accepted into a Clinical Trial and had my 1st ERT infusion a month later on Dec. 19th. My wife and I had reservations for our 1st Cruise to Ensenada Mexico with another couple from my work. It was a 3 Day Cruise planned for the end of January from Friday to Monday. The Cruise had been planned for at least 7 months ahead of time. Month by month I was slowly losing my leg strength and unable to stand up from a chair on my own. My legs felt like jello, like I had run a marathon with only taking a few steps. I could no longer climb up stairs unless I held onto a railing and stepped up only with my right leg. I had no energy, I was exhausted and tired after work even though I sat at a desk all day long.

I was beginning to think that we might have to cancel our Cruise. I did not want to be a burden to anyone. My sister told me she had a wheelchair that I could borrow to help with the embarkation and debarkation of the Cruise so that I wouldn't have to walk very much or stand in lines. I was able to schedule with my Clinical Manager 3 ERT Infusions before our Cruise. I was not going to let Pompe ruin our fun of our 1st Cruise. After only 3 Infusions, I was feeling like I had so much more energy. I was ready to take this Cruise head on. I used the wheelchair to get on the ship and use the elevator to go up and down all the decks. Once on the ship, I decided to leave the wheelchair in the room and walk around and enjoy the fresh sea breeze, sunshine and ocean air. When we docked in Ensenada Mexico, I used the wheelchair to go on a sight seeing tour to the La Bufadora. "The Blowhole" to experience something new and do some shopping in the market. We had such a fun time. I even had a shirt made up for the Cruise of my favorite baseball team, The Angels and had the custom name of "Cure Pompe" on the back with the number of 50 to represent the age I was diagnosed with Pompe. I wore the shirt on the Cruise to be an advocate for Pompe and to share it with others. I may have Pompe but it's not going to get the best of me. I am Blessed and Grateful that I was Cruising with Pompe. #ontheroadtopompe

Additional information: I was recently interviewed by a news reporter from Spokane,Wa with KHQ a  local NBC station about being a Gonzaga Bulldog fan and about Pompe right before the Sweet 16 game for March Madness. I would like to share the interview to include on the Blog for April 15th. I want to be a advocate for Pompe and to spread the word and share it with as many people as possible. Link: https://www.khq.com/news/watch-zag-fan-from-anaheim-hoping-to-spread-word-of/video_94972acc-5123-11e9-b679-ab736189e127.html (not accessible from countries belonging to the European Economic Area including the EU).