The Moment Our World Stopped: Guest Author Tyler Decker
When Tyler Decker is on his surfboard, nothing can get in his way. Surfing is more than a hobby for Tyler, it’s a lifestyle. And the feeling that Tyler has while gliding across the waves – indescribable.
Born and raised in Southern California, Tyler first stood up a surfboard when he was just three years old. After that first experience when he felt the waves beneath his feet, he never stopped. For Tyler, the ocean is home.
But that all changed in June 2020 when Tyler started to notice his muscles twitching in his upper arms and felt weakness throughout his body. Tyler’s symptoms started to affect his ability to surf, so he went to a general practitioner to seek some answers to his dwindling strength.
“We knew something was wrong when he could not get up on his surfboard,” said Tyler’s dad, Albert.
Several inconclusive tests resulted in a few more magnetic resonance imaging (MRI) scans. When the results came back from Tyler’s muscle testing, the doctor realized this case was out of scope, and referred Tyler to a neurologist.
The Decker Family endured a month of uncertainty and speculation before Tyler could undergo further testing. As the list of possible conditions started to narrow, they never considered that Tyler’s diagnosis would be the worst case scenario.
On July 15, 2020 when Tyler’s neurologist ran an electromyogram (EMG test), it confirmed the Decker Family’s greatest fear.
“At that moment, our world stopped.”
At the young age of 26, Tyler was diagnosed with amyotrophic lateral sclerosis, also known as ALS.
The initial symptoms of ALS can vary from person to person. For many, the onset of the disease is so subtle that the symptoms are often overlooked. However, as symptoms begin to develop into more obvious muscle weaknesses and/or atrophy, physicians are more likely to suspect ALS in their patients.
Although ALS can strike at any age, symptoms most commonly develop between the ages of 55 and 75, making Tyler’s diagnosis that much more rare, and that much more devastating. While Tyler can no longer surf, he spends almost every day at the beach, longing for the day he can jump back on his surfboard. The ocean is still his home.
From the very start, our mission was clear and simple: to find a cure for ALS. When Augie Nieto founded Augie’s Quest, he knew it was essential to fund research that would help people currently living with the disease. As Augie likes to say, “If your house is on fire, do you ask the firefighters to find the cause – or put it out first?”
As we continue to fund and support the most innovative science, we need you to help fuel our efforts. Because ALS is curable; it’s just underfunded. Join us, and let’s #WipeOutALS.