Why We Walk for ALS: 'She truly lived life to the fullest'

When my first cousin Eileen Frederick began noticing a weakness in her leg and foot drop, she didn't know what the cause might be. She didn't suspect it was ALS, the disease she and her seven siblings watched both their father and uncle battle decades earlier.

Over the course of a year, Eileen saw numerous doctors and eventually was diagnosed with the genetic mutation that causes ALS. Our family was devastated, largely because we knew what the future might hold.

ALS is a rapidly progressive, neuromuscular disease that causes muscle weakness in the arms and legs and causes difficulty speaking and swallowing. Approximately 10 percent of all ALS cases are inherited forms. Currently, there is no prevention or cure for the disease.

Initially, Eileen was in denial. She was a loving wife and mother, devout Catholic, talented photographer and seamstress, and wonderful cook. She truly lived life to the fullest and, after her diagnosis, she tried to carry out each day as though her body was healthy.

However, she gradually lost the ability to walk, use her hands and arms, complete everyday tasks and even speak. In December 2017, nearly five years from when her symptoms began, Eileen passed away.

It was difficult to see Eileen's health decline, but throughout her journey with ALS she inspired us all. She motivated us to get involved with the Les Turner ALS Foundation, an organization that provided her with services and support.

As a way to help the ALS community and honor Eileen, as well as my two uncles, I am serving as the captain of "Team Eileen" for the Les Turner ALS Foundation's virtual Strike Out ALS 5K and 1 Mile Run, Walk & Roll.

For eight years, our extended family has fundraised for the cause and gathered at the start line in memory of our loved ones who passed away from ALS and in honor of those living with the disease today.

We also have joined the Les Turner ALS Walk for Life in the fall. Our family finds it important to create fun, positive memories with the ALS community.

Because this year's event is being held virtually, we will participate on our own time along our own course. Our team hopes to complete a 5K route near our home in Glendale Heights. Some of us will walk, others plan to run.

We will meet at the finish, remove our masks and celebrate the memories of our loved ones.

We will also tune in to the Les Turner ALS Foundation's Facebook Live event July 16 to connect with the organization and the larger community.

To learn more about the Les Turner ALS Foundation, visit lesturnerals.org.

To donate to "Team Eileen," visit strikeoutals5k.org and search for their team name.