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Home > Young Caregiver Joins Miss Texas Pageant to Raise ALS Awareness

Young Caregiver Joins Miss Texas Pageant to Raise ALS Awareness

by | Jun 3, 2022

Lluvia Alzate recently wrote on her blog, “My mom would always say ‘vive la vida que se va y no vuelve’ which means live your life, time goes on and it will never come back.” Now that her mom, Fanny, is living with ALS, Lluvia embraces this motto every day.

Lluvia Alzate was born in Cali, Colombia. She’s the youngest of three children, with a sister 10 years older and a brother 6 years older than her. At just five years old, Lluvia, her siblings, and her mother, Fanny, moved to the United States. “Moving here, we pretty much started with nothing,”  Lluvia shared.

Her mother worked incredibly hard to provide Lluvia and her siblings with the best life possible growing up. Today, Lluvia is still impacted by her mother’s incredible work ethic. “She always just instilled the importance of education in us and trying to push us to be the best that we could possibly be.”

Lluvia spent her youth involved in cheer, wrestling, and many other school clubs. Like many others, her first introduction to ALS was through the viral Ice Bucket Challenge. Her friends from her teams took part in the challenge thinking it was fun. “I never heard of ALS after that and I never thought I would even be affected by it,” Lluvia shared. Little did she know that this terrible disease would greatly impact her family’s life just a few years later.

In January 2018, Lluvia’s mother started to experience muscle fasciculations in the arm. The family didn’t think much of them. In fact, Lluvia also experienced spasms, joking with her mother that it was normal and nothing to worry about. Concerns arose when the fasciculations in the arms started to spread throughout her mother’s whole body. The family now began searching for answers.

They visited neurologists in November 2018, but all the tests came back saying that Fanny was perfectly healthy. Though the family was skeptical, they accepted the good news, and months passed with no changes.

The Day Everything Changed

Fanny stayed very active and frequently lifted weights. Suddenly, she couldn’t lift the same weights anymore and her arms felt weaker. The family returned to the neurologist for answers. All the while, in summer 2019 Fanny’s speech began to slur.

After more tests and appointments, Lluvia recalls the day that changed their lives forever. It was August 28. 2019, Lluvia’s first day of junior year of college, when she sat in the doctor’s office with her mother, sister and two other aunts. A doctor walked in and broke the devastating news. Lluvia’s mom was living with ALS.

Lluvia described the whirlwind of discovering the diagnosis. She didn’t know at first why everyone was freaking out over the news. “I had to go on Google and research what ALS was and that’s when my heart just completely sunk and I just had to take everything in all at once.” In the following days, a million and one questions ran through Lluvia’s mind. Could my mom continue to live in the house she was living? What will the progression of the disease look like?

Nothing would be the same for their family.

Adjusting to the Caregiver Role

After learning of her mother’s diagnosis, Lluvia faced many difficult decisions. She decided to cancel her lease to move back home with her mother to help around the house. Lluvia now juggled the role of full-time student and caregiver.

“You have to go back and analyze every single choice that you make, because now you have somebody that relies fully on you so you can’t keep making the same choices you were making before,” Lluvia Alzate

Eventually, Lluvia got her real estate license to help her family financially. Maintaining her college classes, job, and caregiving role became incredible overwhelming for her. She would soon take a semester off from college and later reduce her course load.

Lluvia’s life looks very different from what she would’ve thought it’d be right now, but she still cherishes every moment she has with her mother.

Navigating Life with ALS

As the family began to navigate this new diagnosis, the ALS Association supported Lluvia’s family. She feels grateful for the check-ins from the care services team and the knowledge shared about clinics, doctors, and equipment. All the while, Fanny was determined to stay positive through the overwhelming changes.

In her true spirit, she would not let ALS define her life, reassuring her family that everything would be okay. Fanny’s initial symptoms mostly affected her arms, but her legs remained strong. She and Lluvia would take walks around the block, enjoying the sunset and cool nights together.

A lot has changed for the family since Fanny’s diagnosis three years ago, but they still take their evening strolls together. “We still go on those walks, even though they do look a little bit different. Now she’s on a power wheelchair and trach, but she still looks forward to those walks every single day,”- Lluvia

While being an incredible support to her mother, Lluvia continued to pursue her education, taking a couple of college courses every semester. She smiled gleefully as she shared, she would graduate on May 14, 2022, with a degree in business finance. Since her interview, Lluvia has walked the stage and is excited to embark on a new chapter of her life

Becoming a Voice for ALS

Since her mother’s diagnosis, Lluvia has taken every opportunity to share her mother’s story and raise awareness to this disease. And recently, she discovered an unexpected opportunity to continue this mission.

While scrolling on Instagram one day, Lluvia saw that the Miss Texas Pageant was accepting applications for contestants. “Why don’t you do a pageant?” Lluvia’s sisters asked her. After some consideration, Lluvia applied and just a few days later, she was accepted and asked to register. She officially registered as a contestant and saw an amazing opportunity ahead of her through this event.

“Right then and there I also realized why not take advantage of that opportunity to make ALS my platform and shine a light on ALS because this is something that more people need to know about.” – Lluvia

Inspired by her mother’s fighting spirit, Lluvia hopes this opportunity will bring greater awareness to this awful disease. As a young caregiver, hopes her unique perspective will encourage people to get involved in the search for a cure.

Lluvia takes every opportunity to share her story, raise awareness, and raise money in support of other Texans with ALS. She manages her own website and blog, where she shares her experience, educational ALS resources, as well as stories from the ALS community. She’s eagerly ready to serve on the committee for the Houston Walk to Defeat ALS in October.

In May 2022, she hosted a Bootcamp and Bubbles event that raised over $1,400 in support of Texans with ALS. “There’s not enough being done about ALS. We need to find a cure as soon as possible. If it’s not in my mom’s lifetime, it’s for the next person in the future,” Lluvia tearfully shared.

Ultimately, she hopes to let other young caregivers know they are not alone. They have great strength and voice in the fight against ALS.

“There will be many difficult times in this journey where you might feel overwhelmed, tired, sad, or anxious. Just remember that you’re not alone. Difficult times present like a unique opportunity to grow, so just embrace and cherish each day,”

How ALS Patients Can Help

Once you’ve been diagnosed with ALS, it’s easy to feel like you just don’t have many options, but there are ways you can make a difference.

How You Can Help People With ALS

We all have a part to play in the fight against ALS! Your generous support funds critical research for better treatments and a cure for this disease. Here are a few ways you can help: