Spotlight on … Dante Diego, Husband, Dad, and ALS Caregiver

Dante Diego and his wife Amy have been partners in life for over 20 years. They first met working at a restaurant in San Anselmo, California, quickly became great friends, and two years later, began dating. Soon after, they packed up their car and drove across the country to New York City to start a new life together—Dante studied sculpture and later became a builder and contractor, while Amy pursued English and teaching. After marrying in 2005, they started a family, welcoming two children, Tug and Tallulah. Their life together was full of creativity, purpose, and adventure.

In the fall of 2018, Amy achieved a lifelong dream: teaching kindergarten and first grade at the same school their children attended. But by March 2019, she began experiencing symptoms—slurred speech and loss of mobility in her left hand and leg. After months of tests, Amy was diagnosed with ALS at age 52.

As the disease progressed, Amy required a feeding tube in 2020, a tracheostomy in 2021, and became bedbound. Dante gradually stopped working to care for her full time.

“ALS has completely become our entire life,” Dante says. “I am not only a full-time parent, but also a single dad. The disease has robbed our children of so much. Tug, now 18, and Lula, 16, are incredibly strong, but it’s still hard to watch.”

For a time, Amy’s eye-tracking device, the Eyegaze Edge, allowed her independence. She took charge of family Sunday dinners—choosing recipes, ordering groceries, and orchestrating meals from her bed. Even though she hasn’t been able to eat normally for over four years, nourishing her family brought her joy.

Now, as her ability to use the device declines, Dante helps with dinner planning. “Because of the huge smile it brings her,” he says, “we do it anyway.”

Caregiving has taught Dante about love, fortitude, and adaptation. It is isolating and exhausting. “We clean up the mess (and it gets very messy). We put our needs last. We learn, we sacrifice, we rarely socialize, especially in the evenings. We bury, hide, and mask our frustration. We ask for help. We rearrange our life goals and expectations.”

To stay present and level-headed, Dante has built a rigorous self-care routine: exercising, stretching, meditating, attending therapy, journaling, creating art, resting, reading, and nurturing friendships. “I need to stay healthy physically, mentally, emotionally, and spiritually,” he explains.

“The truth of it is, going through this crazy thunderstorm of caregiving has actually made me a stronger, more patient, more resilient, more loving human. This challenge has pressured me into my strength, making me a better person—someone I would never have become had life been normal. But I would never have accepted the trade-off if it had been proposed to me before all of this happened. Would I remain a weaker, less resilient, less patient, less loving human if my wife could never have gone through this? Yes, 100%.”

Now, communication between Dante and Amy relies mainly on “yes” or “no” responses or a letter board. This limited interaction is frustrating, especially as Amy has always preferred to live in the moment rather than research the disease’s progression. 

“Amy has never wanted to see what’s around the ALS corner for her,” Dante explains. “This has kept her present, and I don’t think I would have tried to talk her out of that philosophy knowing what I know now… However this stage is especially difficult for me in particular… It would have been nice to know her more nuanced desires for this stage of her life and care.”

The ALS Network has provided Dante and Amy with equipment, resources, and opportunities to connect with the ALS community. Through the organization, they received a wheelchair-accessible van and other essential equipment. They participated in connection groups, the Walk & Roll to Cure ALS (formerly the Golden West Chapter Walk to Defeat ALS), and even shared their story in a video for the virtual 2021 Walk. Together with loved ones, they formed “Team Amy’s Avengers,” demonstrating the power of community in facing ALS.

“I have to acknowledge the amazing support from our care manager, Sara Holiday and the ALS Network, which has and continues to offer during each step and struggle ALS has imposed upon us. Whenever a new challenge arises—be it physical, financial, or emotional—the ALS Network has the resources to offer help.”

Today, Dante continues to participate in the caregiver connection groups, both in person and online. After six years as a caregiver, he has also become a mentor, offering guidance to others beginning this journey.

Through the challenges, Dante and Amy’s story is one of unwavering devotion and endurance. It highlights not only the struggles of ALS but the importance of community, love, and family. Dante reflects, “Amy has gone through so many stages of loss, and I’ve helped navigate them. I’ve gained experience that I am happy to share with others.”

Their journey reminds us that life with ALS is not just about loss—it’s about showing up, adapting, and loving every day.