I created the Vive la Vida Movement to raise awareness of ALS, a progressive neurodegenerative disease which does not have a cure.
A very personal experience with ALS
I was born in Cali, Colombia. Youngest of 3. My oldest sibling (sister) is 10 years older than me. And a brother that is 6 years older. I moved to the US when I was 5 years old.
My mom was and has always been a hard worker her whole life so coming here to the US with nothing but her 3 kids she knew she had to push herself and instill the importance of education in us.
Going through my teenage years, I was always involved in extracurricular activities in school from cheer to wrestling and being involved in different school clubs. It’s crazy because I remember being involved in this thing called “The Ice Bucket Challenge” during this time and doing the challenge with my teammates having no idea what the challenge was even initially for. Not until I was faced with my mom getting diagnosed with ALS later that I realize that the ice bucket challenge was to help spread ALS awareness.
I was about 20-21 when my mom started initially getting symptoms of ALS but she was not diagnosed until a whole year later (which is usually the case for most patients with ALS since there is no single test to diagnose it, you basically wait till symptoms progress enough to finally rule ALS).
My mom’s initial symptoms were muscle fasciculations in the arms. We didn’t think much of it. My mom was the fittest healthiest person I knew, loved, and lived life to the fullest. She would wake up early mornings and spend 2 hours at the gym before starting her day. Always watched her diet. So, the thought of her ever getting sick with a terminally fatal disease was the last thing on everyone’s mind.
On August 28th, 2019 (I will never forget this day), my mom had a doctor's appointment. I remember being in the room, with my mom, sister, and 2 other aunts, doctor walked in and sat down with us. He finally says “After deep evaluation, we are certain that Fanny (my mom's name) has ALS, my condolences to your family.” My aunts and sister all break down and I am more confused than ever. ALS? What the hell is ALS. I grab my phone and quickly Google ALS. “Terminally fatal disease,” “live up 2-5 years,” “no cure.” My heart sank. Instantly tears started pouring down my face. Still so very hard to understand because I would then look at my mom and she looked so healthy and normal. She didn’t shed not one tear, she was so determined and positive that this disease would not define her nor face her in any way. The hope that she had, was just so admirable and was the only thing that reassured me that everything would be ok. That day was also the first day of my junior year in college. We then started going to ALS clinics in which they would check her progression every couple of months.
Here our life’s made a whole 180 degree change. We then had to start thinking about all the obstacles we were going to face that came with this disease.
By May 2021, she had a G-tube (feeding tube) and that was basically the last time she ever ate from her mouth again. By this time she already needed someone to be with her at all times of the day. I am still going through this ALS journey and I can say I am grateful. This has been the most difficult but special experience of my life, as much as I wish it wasn’t my mom going through this. I have learned that faith should always be greater than our worries and problems. I have learned to focus on the things that truly matter in life and that brings me meaning and purpose. The Lluvia I was before ALS is not the same Lluvia I am today. As much as I feel ALS has taken from me, it has also given me so much more strength. They say you find beauty in the struggle and hard times and I am here to be a testimony of it.
My mom would always say “vive la vida que se va y no vuelve” which means live your life, time goes and it will never come back. That was always her motto. I now take this motto with me. I graduate from the University of Houston in Business Finance this May, then compete for Miss Texas in July, and am looking forward to my mom being front stage through it all.
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