2026 walkALS Georgia: Heather Warren

I am participating in the walkALS Georgia and I need your support!

Amyotrophic lateral sclerosis (ALS) is a progressive neuromuscular disease that slowly robs a person of the ability to walk, speak, swallow, and breathe. It can strike anyone and, although there has been a lot of advancements in ALS research, we still don’t know what causes it. An ALS diagnosis is fatal because there is no cure.

My sister's husband Fred lost a 5-year battle against ALS 19 years ago. He left behind a wife, a 10-year old daughter and an 8-year old son. In years past, I've shared how the benefits received from the ALS association helped Fred live and communicate. This year, I'm resharing some insight into the life of a child with a parent who was stricken with ALS. Following is an excerpt from a story that an 11-year old Brittany wrote.

"The worst thing that ever happened in my life was the fall picture day in 5th grade. It all started in kindergarten though. That's when I started taking care of my dad. It's hard, being young and already having to do so much.

My dad had ALS (also known as Lou Gehrig's disease). Every day was a struggle, for my dad and for my family. We all worried that one of his many machines might not work, and that would be very bad. Our house was simply full of machines, machines and more machines. In the last year, he could barely get out of bed. He couldn't eat, so he had a tube in his stomach that we fed him through. My dad needed help to sit up, go to the restroom, take a shower, shave, brush his teeth, move his hands, roll over, anything simple.

I started fifth grade, and my dad just kept getting worse. I would lay down next to him and treasure every moment I got to spend with him. Time was running out for my dad. On August 26, I made a card for him. It was by far my favorite, and I think it was my dad's favorite too. I gave it to him that night and cuddled with him for an hour. I gave him a hug and kiss and went to bed. The next morning, he was really sick. I gave him a hug and kiss and left for school.

I sensed that something was wrong as soon as I got off the bus. My brother and I walked home and as we entered my cul-de-sac, there were a bunch of cars in my driveway. I was nervous. I walked in the house and the first thing I registered was how clean it was. Then my mom came down and brought my brother and me upstairs. Her eyes were red. I snuck a peek at my dad, but he wasn't there. At first, I thought that he was better and he was at the hospital learning how to walk again. So, I asked my mom, 'Where is Daddy?'

She took my brother and me into the office and sat down on the bed. She said 'When I got back from dropping you off at the bus stop, your dad was sleeping so I tried to wake him up. He wouldn't wake up. I called 911. They said that he had passed away.'

She started to cry. My brother was making the saddest sounds that I have ever heard. I was in shock. What? My dad was dead? It couldn't be. My mom said that we weren't going to go to school the rest of the week and then it hit me. I was never going to see my dad again. Then, I started to cry. We just sat there crying, where all of my thoughts were a jumbled mess and all I could think about was my dad. My dad, who was strong and brave and my hero. My dad, who I would never see again for the rest of my life. Who I only got to see for 10 years before he was taken away so suddenly."

I am walking so that, one day, when Georgians hear the words, “You have ALS,” it will no longer mean that they likely will die within two to five years. I am walking so that Georgians living with ALS today know that they are not alone. I’m walking to assure that when they need help, they will be able to get it from ALS United of Georgia. I am walking to give them hope. And I am walking so sons and daughters and spouses don't have to endure what Hillary, Brittany, Brandon and Fred went through.

Any amount, great or small, helps. I greatly appreciate your support! Thank you!

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