2025 marks the 25th anniversary of the Walk to Defeat ALS. One Miami couple has been very transparent about their journey fighting the disease, even serving as ambassadors for ALS South Florida, but this year, they will not be able to walk.
Maria Fernandez and her husband, Jules Rodriguez, told CBS News Miami they don’t take a single moment together for granted.
“Last October, we thought he was gone. There was a night in the hospital where we both thought, ‘That was it’ — it ended up not being it, so anything after that has been a bonus,” Fernandez said. “Incredible, beautiful, bonus time.”
The couple has been documenting their journey with ALS from the very beginning on Instagram and with a podcast. They said they very quickly, they found out that the more they shared their story, the more they found ways to heal.
“You could just either feel like it’s just oh poor us, or wow like look at this life, look at this love, look at this courage, look at this resilience,” Fernandez said.
Rodriguez lost his voice, and the muscles in his head and neck progressively weakened along with those in the rest of his body due to ALS. Doctors were worried that he might not be able to breathe on his own for much longer, so they inserted a tube into his windpipe to help him breathe. The procedure extended his life, but it also brought an end to his ability to speak.
Rodriguez is now able to communicate through a machine that uses eye gaze technology and AI cloning of his voice. Using the machine to communicate, Rodriguez described the moments he is most grateful for.
“I am so grateful for my wife. Without her, I would have died a long time ago. She has been there through the darkest times of my life, and she keeps me in check, too. My son and his love, he is only eight years old, but he is more caring and supportive than most adults, plus he is pretty funny too. I am grateful for the friends and family who have helped us throughout the years,” he said. “It truly takes a village to live with this disease.”
Rodriguez has managed to keep his sense of humor, too. He uses his AI voice for comedy performances — a groundbreaking achievement, delivering a stand-up comedy set.
“I also realize the time I have left in this world doesn’t have to be filled with sadness and anger,” he said.
They said they hope their love for each other, compassion, and resilience are an inspiration for whatever adversity others may face.
“The past five years have been so, so, so hard and I don’t know how much longer we have together, but I know that for whatever reason, my husband, myself, my son and I were brought together to figure this really hard thing out, and just like us, there are so many families out there, that are going through the same,” Fernandez said.
Although the couple won’t be able to attend this year’s walk, they want to encourage others to walk on their behalf and for other people in the community fighting the disease.
The 2025 Walk to Defeat ALS Miami will be at Florida International University Biscayne Bay Campus on Saturday. Registration begins at 9 a.m. For additional information on the 25th Anniversary Walk to Defeat ALS, visit their website.
