November 2025
by Scott Butler
I took my family to Universal Studios Epic Universal Studios mainly to experience The Isle of Berk from How to Train Your Dragon, one of my favorite movies.
As my ALS progressed, we were not sure if I would be able to make this trip. I had battled covid and was in the hospital with critically low sodium for 4 days in the months leading up to this trip.
This trip became a goal, to make it on our Team Gleason Adventure. I was able to fully recover and make it to FL! I am grateful to my wife who works so hard as my sole caregiver.
I am in awe at my children and how they have rallied to help take care of me and how they still live life and accomplish so much. They have a burden that only heaven knows. ALS is a terrible disease, and I wouldn’t wish it on anyone. But I am grateful for those who have supported me and my family, including Team Gleason. The ALS community is truly the best!!!!
My favorite part of the adventure was being together as a family and losing the heavy burden of ALS, even if it was for only a few days. Seeing the excitement and joy of our girls as we experienced this adventure together helped to renew my strength to battle this disease.
We did face challenges. The drive there was rough. When you are riding in the back of the wheelchair van, the bumps are bumpier. And flights not being friendly to wheelchair users didn’t leave us much choice but to drive.
Guest services at Universal Orlando was not as convenient as it could have been. The person we dealt with was cold and not as helpful as we hoped. The weather changed on us from hot and humid to bitter cold in a matter of an hour.
The bumpiness of the roads were a struggle to navigate through the parks. I get they add to the ambiance, but it jostles my eye gaze and my body.
The aisles at the parks were extremely difficult to navigate through for the family swap as i can no longer be left alone. They did not allow me to switch places unless i was in the family swap area. I am in my power wheelchair with an eye gaze device on the front and a non invasive ventilator on the back. We nearly busted my vent tube a few times navigating the aisles. It was stressful.
It was difficult to navigate Universal Orlando and Island of Adventure. Epic, as it is a newer park was much more accessible.
The staff at Epic was so much friendlier towards me and engaged me as a person, unlike staff at Universal and Island of Adventure. They took the time to ask me how I was and waited for me to type on my eye gaze device. I am so glad we were able to experience Epic and highly recommend this park to everyone.
The most memorable part of this adventure was looking down the aisle as we watched the How to Train Your Dragon show, watching my girls filled with awe as Toothless and Hiccup soared above us, for that moment I forgot the aches, pains, fears and sadness of what I am facing.
This adventure was the perfect one for me.
My greatest accomplishment in this life is the family my wife and I have created.
My happiest times are when we are together as a family, vacations are the best, because we can leave our everyday cares behind and live in the moment.
I was able to do that and watch as my girls could be “normal” for a time.
This adventure helped me to be in the moment and enjoy the small things.
We made many memories and are so grateful to Team Gleason for their help.
A Note From Erin, Scott’s Wife:
Scott has always been a huge fan of the movies. One of his favorite’s is ‘How to Train your Dragon.’ It has been one that we have watched with our kids over and over again for our epic movie nights. We quote the movie often in our home: “You just gestured to all of me,” “Soil, my britches,” “Thanks for nothing you useless reptile.” We have many laughs and memories surrounding this movie.
In the second film, tragically the dad dies. This hits home for our family as Scott has 6 children aged 22 to 9. One of our favorite lines is ““But with love comes loss, son. It’s part of the deal. Sometimes it hurts, but in the end, it’s all worth it. There’s no greater gift than love.” Scott encourages the kids that like Hiccup, there is a time to mourn but there’s still life to live and much good to be accomplished.
