April 2025
by Glenda Hernandez
Beyond the Diagnosis: How Our Family Lived a Dream in the Midst of ALS
When the Diagnosis Changes Everything
In October 2023, my husband was diagnosed with ALS.
Within a few months, he lost much of his mobility.
What we had once dreamed of—visiting Utah’s national parks—seemed impossible.
A Dream That Seemed Out of Reach
Ever since we moved to Utah seven years ago, we had heard about its famous national parks.
We always dreamed of visiting them someday…but everything changed with the diagnosis.
The disease progressed rapidly: within six months, he was feeding through a tube and could barely walk.
But the most difficult part was the weakness in his neck, caused by the bulbar-onset form of ALS.
A New Hope: Team Gleason Adventure
Just when we thought that dream had been left behind, Team Gleason Adventure stepped in.
They not only offered us financial support, but something even more valuable: they encouraged us to believe that—even with limitations—it was still possible to live something extraordinary. We began to dream again.
What had started as an abandoned idea due to illness became a living expression of God’s grace. With reduced mobility, extreme weakness, and the need for constant care, we did what seemed impossible: we visited several national parks in just seven days.
The Adventure Begins
Finally, the big day came. We began our trip to Southern Utah, accompanied by our daughter and her family, along with two beloved families who had shared adventures with us before. And what a beginning we had: we were welcomed by a snowstorm in the middle of April!
For a couple of hours, we drove through the snow, fully prepared with everything needed to keep Máximo comfortable and cared for.
First Stop: Moab
Our first stop was Moab, after about four hours of driving—one of the longest stretches.
That afternoon we rested, getting ready for the first park.
The next day, we visited Arches National Park.
The van we rented allowed Máximo to enjoy the breathtaking views he had long dreamed of seeing.
Accessibility Opened Doors
Every park we visited had accessible areas.
We adapted everything necessary so he could enter and enjoy each place to the fullest.
We also booked accessible hotel rooms, and although he feeds through a tube, we shared breakfasts and meals together as a family.
We even went to an ice cream shop where he tasted just a little—one small gesture that brought him great joy.
A Route Planned with Love
My husband, always tech-savvy, carefully planned every leg of the trip:
- schedules
- stops
- rest times
- meeting points
One of his favorite parts of the day was gathering with everyone at night—either in our room or a hotel lounge—to talk and pray together before bed.
Máximo planned everything with care, making sure no one was left out.
Parks We Visited
During seven days filled with beauty and fellowship, we visited:
- Arches National Park
- Canyonlands National Park
- Glen Canyon
- Lake Powell
- Goosenecks State Park
- Bluff Fort
- Four Corners Monument
- Bryce Canyon
- Zion National Park
- St. George
Gratitude That Remains in the Heart
We lived an unforgettable experience.
We cherished every landscape, every conversation, every smile.
Seeing my husband’s face light up with the beauty of God’s creation was a gift.
Although the trip was physically demanding for him, he gave it his all to enjoy every moment.
He didn’t let his limitations stop him.
We saw God’s creation in all its splendor: sunrises over stone arches, canyons carved over centuries, the spectacular colors of sunset.
Each view reminded us that though our bodies may grow weak, the soul is renewed as we behold the glory of God.
We achieved it, not by our own strength, but by the encouragement God gave us through others—like this organization.
To Other Families Living with ALS: Don’t Give Up.
There is still room for joy, adventure, and delight, even in the midst of pain.
What We Learned – With planning, it’s possible:
- Adapting times, routes, vehicles, and lodging makes all the difference
- Community is essential: Sharing the emotional weight with others keeps it from becoming unbearable
- Never lose hope: Even if dreams seem out of reach, they can still come true—differently, but just as beautifully
Thank you, Team Gleason Adventure, for making it possible. And thank you, Emily, for all your help.
