While most of us watched the Feb. 13 Super Bowl LVI from the comfort of our own homes, one Sweet Home family saw the Los Angeles Rams slip past the Cincinnati Bengals from right above the Rams’ tunnel in Row 15 at SoFi Stadium in Inglewood, Calif.
Vicki DeLong, 53, who was diagnosed with amyotrophic lateral sclerosis (ALS) in February 2019, scored the free tickets from Team Gleason, which has provided more $20 million in adventure, technology, equipment and care services to more than 20,000 people living with the disease. Former New Orleans Saints safety Steve Gleason founded the nonprofit in 2011, shortly after his own diagnosis.
There are fewer than 20,000 U.S. cases of ALS per year, making it a very rare nervous system disease. It causes nerve cells to break down, reducing functionality in the muscles they supply. The disease can lead to problems with breathing, speaking, eating and walking. Its cause is unknown, and a cure does not yet exist.
ALS has affected every area of DeLong’s life, leading to her 2019 retirement after 22 years as office coordinator for the Oregon Department of Forestry’s Sweet Home office.
“I retired right after I was diagnosed so that I could focus on spending time with family and enjoying life,” she said.
Although she still walks, talks and eats without assistance, she no longer drives and still requires help with tasks.
Every year, Team Gleason offers an “Adventures” series for people afflicted with ALS. DeLong shared her dream with the organization shortly after Thanksgiving 2021: to take her sons, 31-year-old Marcus and 33-year-old Phillip, to the Super Bowl and enjoy a weekend with her four grown children in Southern California.
Two months later, on Jan. 24, she learned via Zoom that her wish was coming true with four tickets to the big game. With that, she, her sons and her husband, Alvie Leach, were Super Bowl-bound.
“It was super-exciting,” she said. “The boys were both really excited when I called to tell them.”
(In addition to the tickets, Team Gleason provided $1,000 apiece for airfare and Airbnb accommodations. Last August, the organization gave her a foldable motorized wheelchair, which she uses to cover long distances. Its fold-away function makes it ideal when traveling.)
The family met up with Vicki’s other two children, Emily Blanchard of Eugene and Tiffini McAlinneui of Southern California. On the Saturday before the Super Bowl, they all enjoyed a family breakfast and crab boil dinner in the evening. Then, at 11:30 a.m. the following day, the quartet entered So-Fi Stadium after the gates opened.
The family was able to walk onto the field through the Rams’ tunnel before the game and stand on the sideline while players practiced and TV talking heads delivered their pregame shows.
When the action started, the family started rooting for… well, it’s complicated. DeLong said she doesn’t have a favorite and neither of her sons’ teams were playing. Still, everyone took sides.
“We were a little bit of a family divided,” she said. “My husband and I wanted the Rams and Marcus wanted the Bengals.” Phillip, she added, didn’t really care who won.
DeLong stood in awe of the event’s magnitude.
“It was so overwhelming,” she said. “It was huge and there were so many people. I had never been to an NFL game. It was super-exciting, every part of it.”
She was happy that her sons were able to share in the experience. That was her highlight: being with them and watching their faces. “It was really exciting to share that with them, because that is a once-in-a-lifetime thing,” she said.
She never thought she’d attend a Super Bowl. “I always thought it would be cool, but it’s not something in very many people’s budgets,” she said.
Two other Team Gleason families sat in the same section: one from Canada, the other from the Los Angeles area.
“They were great,” DeLong said. “We had a great time.”
While she doesn’t expect to apply for any more Team Gleason adventures – she means to “spread the wealth,” DeLong plans to reach out to the nonprofit when it’s time for a full-size power wheelchair with an elevator lift, so she can converse with people at eye-level. Her insurance doesn’t pay for the lift. “Team Gleason covers that for ALS patients because they feel it’s really a necessary thing,” DeLong said.
No matter what happens in the future, DeLong knows she gave her sons and family an unforgettable day.
“For the rest of their lives, every year when they watch the game they are going to remember and talk about when we went,” she said. “It’s just a memory I want them to have forever.”