In a Father's Honor: Roth's Hope to Defeat ALS

Photo by Gail Burton
Photo by Gail Burton

ALS, or amyotrophic lateral sclerosis, is a "progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord," according to the ALS Association. According to the Association's website, there are more than 20,000 Americans that are affected by the disease at any time, with more than 6,000 cases being diagnosed each year. 

May is ALS Awareness Month and is a cause near and dear to UMBC women's soccer goalkeeper Leah Roth's heart. Roth's father, Thomas, was diagnosed with ALS when she was just a child.

"He was officially diagnosed when I was around three, so I didn't really understand at the time," Roth said. "Growing up, he was in his wheelchair and that's all I remember. It can start anywhere and goes up to the brain, so my dad's started at his feet and then took away his motor skills. It's hard to get used to, but since I grew up with it, it's all I knew."

Roth's father lived for 13 years with ALS. According to the ALS Association, the life expectancy for those with the disease is between two to five years from the time of their diagnosis. Half of those diagnosed will live longer than three years, with "up to ten percent" living more than ten years.

"He passed away my freshman year of high school and it happened quickly. There were a few times we thought it was getting closer, but it never really was," Roth said.

As Roth got older, she became more of a helping hand around the house to her mother, Patricia. While there was care for her, Patricia "made her life" caring for Thomas during his illness.

"Growing up, I had a lot more responsibilities. I have two brothers and a sister but they are a lot older," Roth said. "So by the time I was nine or ten, I was the only one left in the house with my mom. I had to be there for her more, too, and staying strong for her."

Roth also noted how her family's house had to go through major renovations to adapt to the progression of her dad's disease as time went on.

"We had to add a whole addition onto the main level of our house for my dad's room, add an elevator to get him in and out of the garage, we had ramps installed, we had to get a new truck to transport him and his wheelchair," Roth said. "At the very end, we had to get something that lifted him out his chair and into bed, and my dad had to use something similar to what Stephen Hawking had where he used his eyes to speak."

This year, Roth and her teammates plan on raising funds to donate to the ALS Association's "Walk to Defeat ALS", which will take place in October in Washington D.C. These walks, which take place all over the country, were always apart of Roth's life and she had a little bit of an extra push to do something this year.

"The walks were a big part of my childhood, but I always forgot," Roth said. "[Head women's soccer coach] Vanessa [Mann] is really big on community hours so I actually remembered this time."

Since Roth knows how much it takes for a family to adjust to life with ALS, she wanted to start her fundraiser to help others who have been affected by the disease.

"What actually inspired me to start the GoFundMe was because I know how much it is to adapt to the disability. Every little bit helps because the money isn't just going to the research, it's going to people who have the disability to get the help that they need," Roth said. "Any little bit helps with a donation. It's nice to do something because we're able-bodied people."

Those interested in donating to Roth's GoFundMe page may do so here. To learn more about ALS and to find other walks, visit the ALS Association's website here.