ALS affects all people in the family – including kids. And while most ALS youth caregivers demonstrate amazing resilience and grace, they have complex experiences and feelings when living with a parent or family member with ALS.

Natalie Woody was only four and a half years old when her father Lamar was diagnosed with ALS in 2018. Full of personality and spirit, Natalie’s parents agree that she’s no different than any other child her age, she just happens to have a dad who has ALS.

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Now in the third grade, Natalie loves music, and she loves to sing and dance and play with her friends, especially in what she calls her “chill zone.” Conceptualized by Natalie and a school friend, Kristina and Lamar transformed an oversized walk-in closet in a spare room into a creative and whimsical space stocked with snacks, drinks in a tiny mini-fridge, books, artwork, pillows and a movie projector. “We kept asking my mom every hour, ‘Can you turn it into a playroom? Can you turn it into a movie room?’’” Natalie recalls.

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Like Lamar, Natalie loves art and is very interested in science. From drawing family pictures and trying to duplicate Lamar’s artwork, to building rockets and random science projects, Natalie keeps Lamar and Kristina on their toes. “She's definitely our light in our life for sure,” Kristina says.

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For a recent art project, Natalie drew the three of them in front of their home, carefully illustrating all of the details, even the sayings on their shirts. “I had my dad in the middle because he was the tallest and I had my mom on the other side and then me on the other side of my dad and we were all three holding hands and then there was the house in the background with birds flying,” she said. “My mom's shirt said, ‘Moms rock.’ My dad's said, ‘Beast on.’ And my shirt says, ‘G Power’ which means ‘Girl Power.’”

Natalie is very frank about her knowledge of ALS. “What I know about it is that people can get really sick, and it causes them to not walk. It just causes them to sit in bed all day. They can't get up.”  Kristina says Natalie does understand ALS is a terminal disease, as they have had to have those conversations with her as she's aged. “We teach her not to be afraid of how things look or an end, but to have courage and be assured that our family operates by faith and love.” 

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Natalie recalled a time just prior to Lamar’s diagnosis when she really noticed things were changing with her dad. “One day, when I was like four, I was riding bikes with my mom and my dad around the neighborhood, and my dad just stopped. I said, "Dad, what happened?" He said, "I don't know, I just was telling my feet to drive, my legs to drive but then they weren't. They just slowed down."

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“Natalie has grown up literally seeing the physical evolution of Lamar's illness,” says Kristina. “She makes a point to fix him drinks or snacks in the kitchen. She likes to help with yardwork, which he sometimes can't do. Her caring spirit really shines when it comes to her dad.” And for the most part, despite ALS, Kristina and Lamar feel like they are just like any other family. “We have resolved that we are learning what everyone in this world is learning, just at warp speed.”

Special thanks to Lamar, Kristina and Natalie for allowing us to share their family’s personal journey with ALS. Over the next few months, we’ll be sharing more about what their everyday life living with this disease, and we hope you will follow along and share with your family and friends.

To help families impacted by ALS and provide support for children and young caregivers, The ALS Association has produced a series of books and resources available on our website HERE.

To learn more about how you can get involved in the fight against ALS, visit our website HERE.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.