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Spotlight on... Robert “Chespi” Arellano Jr.

Written in loving memory, by Sarah Marez

ALS affects everyone differently.

Just to give you some perspective on how rapidly this illness can progress, in August 2011, I had my dream wedding. Just as I had always hoped and imagined, my father was able to walk me down the aisle. By August 2012, my father, Robert, was diagnosed with amyotrophic lateral sclerosis (ALS). At the time, I was pregnant with my son when I received the news that my father had this incurable disease.

 Sarah Marez with Robert "Chespi" Arellano Jr.

At the time of his diagnosis, my father was working double shifts as a correctional officer. Seven months later, he was forced to retire at the age of forty-nine, as he no longer had the strength to work. In late 2012, he was unable to utilize his hands and arms. Because of this, he could not hold my son when he was born in November.

For my father, the disease began with muscle weakness, fatigue and slightly slurred speech. The symptoms were so mild at first that they were largely ignored and thought to be something else completely.

Throughout his life, my father was always active. He loved the outdoors, was an avid handy man and held a life-long passion for cooking. I’m not sure if this made the disease more difficult to bear, but it was a constant reminder of life before ALS. My dad and I loved music and loved to share a dance together. My father inspired us all with his courage, his sense of humor and his love of life.

Like so many others, we hadn’t before heard of ALS at the time of my father’s diagnosis. Almost immediately, we began a desperate search for information about this disease which, without warning, changed our lives forever.

What we found was genuinely frightening, bleak and grim. ALS is an always fatal neurological disorder characterized by the progressive degeneration of nerve cells in the brain and spinal cord. As motor neurons are destroyed, a person loses his or her ability to walk, speak, swallow and breathe.

During this time, we found out about all the wonderful fundraising and assistance offered by The ALS Association Golden West Chapter. My dad was given a wheelchair he could operate with movements from his head. He was also given the opportunity to get physical therapy in Fresno and my mother and I were able to take free classes to learn to care for my dad.

In 2014, my Dad lost the ability to speak and eat on his own. He was given a feeding tube and also was provided with free liquid nutrition from The ALS Association Golden West Chapter, because of all the funding provided by fundraising and the Walk to Defeat ALS.

My father passed away in April 2015 and I continue to dedicate my life to raising awareness for this relentless disease and most importantly, making a difference in the lives of the thousands stricken each year. I would like to publicly thank my amazing family and friends on Team Chespi, who recently took the ALS Ice Bucket Challenge with me in memory of my father. Your support is everything!

 The Golden West Chapter's Central Valley Walk to Defeat ALS team, Team Chespi

I am writing today to ask that you please join us in this important fight to defeat ALS. Not only does this help those diagnosed with this disease but also helps families trying to support their loved ones.

Please sign up and fundraise for your local Walk because it is only together that we will defeat ALS.