Alaa Abdeldaiem is NWIndianaLife.com's #1StudentNWI representative at Crown Point High School. For her first story, Alaa wrote about a Crown Point High School family who took the ALS Ice Bucket Challenge in memory of their father, who passed from the disease three years ago. Ideas in Motion Media is looking to hire one student at every school in Northwest Indiana to share the good news at their school. If interested, send an introductory email to share@nwindianalife.com.
The change was subtle. Emily Dawley and her brother Paul Dawley were just four and three years old, and things seemed very normal.
They didn't know any better. Their father, Michael Dawley, was laughing and joking around like usual. Nothing hinted to them that he had been diagnosed with amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's disease, that winter of 2000.
"He seemed fine, so we never really thought about it," said Paul, now a junior at Crown Point High School.
Then Michael had trouble moving around. Walking, talking, and eating became a challenge. Things got harder.
But Michael was still laughing, still joking around.
He was strong. Most people diagnosed with ALS live only two to five years. Michael lived for 11 before passing away three years ago.
"It was a challenge, but we had each other," Emily said. "Our mom was very good about making sure we still had a normal life, and my dad was an inspiration, always trying to put a smile on people's faces despite his condition."
Because their father never complained, neither did they. Instead, Paul and Emily took it as an opportunity to grow.
"No one can change the way things are," Emily said. "We learned that there's no point complaining about it and making people feel bad for you, that you have to accept your situation and make the best of it."
Seeing a loved one suffer from ALS wasn't easy for the Dawleys. Up until this summer, explaining what exactly ALS was was just as difficult.
"When people would ask us how our dad died, we'd tell them he died from ALS, but no one back then had any idea what we were referring to," Paul said.
So they'd explain:
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, the motor neurons traveling from the brain and spinal cord eventually reaching the muscles throughout the body. Degeneration of the motor neurons often leads to total paralysis and, almost certainly, death.
Their explanations did little, however. There was a lack of awareness about the disease, and the Dawleys thought things would stay that way.
Until this summer, when Emily and Paul first saw the ALS ice bucket challenge go viral.
An attempt by Boston College's Pete Frates to raise awareness on the disease, the ALS ice bucket challenge involves people filling a bucket with ice and water, dumping it over their heads and posting it on social media. The phenomenon has raised $100 million according to the ALS foundation.
"It's awesome," Paul said. "I've never seen anything related to ALS like that on a larger scale. Now we tell people our dad died of ALS, and they actually know what it is. It's amazing."
Emily and Paul took the challenge in honor of their dad.
They hope that this awareness for ALS continues and that the history of the ice bucket challenge is never forgotten.
"I hope that people can look back and remember the summer of 2014 as the one they did something good for ALS," Emily said. "This is a good thing. I hope it never ends."