Lluvia Alzate was just five years old when her family immigrated from Colombia to the United States “with nothing but a suitcase and each other,” she recalls. Despite the challenges they faced, Lluvia remembers her mother, Fanny, working tirelessly to provide her family with the best possible life.
August 28, 2019 was the first day of Lluvia’s junior year of college and a day she remembers vividly, not for the normal anticipation of going to class, meeting new professors or buying books, but for the anticipation she felt about accompanying her mother to an appointment with her neurologist. That was the day they heard those three devastating words, “You have ALS.” She watched her family become emotional all around her as she sat confused. She quickly googled, “What is ALS?” and instantly saw the statistics, “two-five years to live” and “100% fatal,” and knew her life would be forever changed.
Fanny’s symptoms had started in early 2018 when she started to experience muscle fasciculations in her arm. After numerous appointments and tests, the family was told Fanny was in fact perfectly healthy. It was the following summer when her speech began to slur that it became clear something was wrong.
“I was still in disbelief because when I would look at my mom, she still looked so perfectly healthy, I knew things were going to start changing soon and fast and that I had to cherish every single moment with her to come,” Lluvia said.
Lluvia quickly shifted gears, moving back home to help her mother, taking on her new role as a full-time student and caregiver. Eventually, Lluvia got her real estate license to help her family financially, but maintaining her college classes, job, and caregiving role became overwhelming. She took a semester off from college and later reduced her course load. Despite all these challenges, she went on to graduate with her degree in business finance in May 2022.
Lluvia was determined to take every opportunity to share her mother’s story and help raise awareness about ALS. She took every public speaking opportunity she could find at ALS events including media interviews but knew she wanted to do more. Scrolling through Instagram one day, she saw the Miss Texas Pageant was accepting applications for contestants. Her sisters encouraged her to participate, so she applied and was asked to register. She saw it as an amazing opportunity to use the pageant as a platform to spread awareness about ALS on a broader scale.
By the summer of 2022 at the Miss Texas pageant—the first time Lluvia ever competed—ALS had fully taken over her mother’s ability to speak. Although she was in a wheelchair fulltime, she was able to be there to watch her daughter on the big stage. Lluvia didn’t win this time, but she was not giving up.
Growing up, Lluvia recalls her mother always saying, “Vive la vida, que se va y no vuelve,” which means “live your life, time goes on and it will never come back.” In honor of her mother’s motto, Lluvia has created a movement she calls ‘Vive la Vida’ to raise awareness and support for other families affected by ALS. She hopes she can let other young caregivers know they are not alone and that they have great strength and voice in the fight against ALS.
Sadly, Fanny passed away in December 2022. In February 2023, Lluvia went on to participate in her second pageant and received her Miss Houston USA 2023 crown—with her mother’s smile in her memory and spirit in her heart. And while her mother didn’t get to see her win her title, Lluvia knows how proud her mother is of all she’s accomplished.
“Moving forward, I continue to be inspired by my mom's strength and resilience,” says Lluvia. “Her determination to live life to the fullest, even in the face of adversity, continues to motivate me to pursue my goals and dreams. Her legacy lives on in me, and I hope to continue to make her proud.”
Special thanks to Lluvia Alzate for allowing us to share her inspiring story. To learn more about how you can use your voice to help fight ALS, visit our website HERE.