In families where a loved one is diagnosed with ALS, everyone is touched by the ripple effects of the disease. And for some families, that impact reaches children who often find themselves growing up faster than expected, stepping into the difficult role of becoming a caregiver.
Kaitlyn, 15, and her younger brother Joe, eight, both live in Texas, and help care for their father, CJ. Addison, 10, and her older sister Riley, 15, from Kentucky, provide care for their mother, Katie.
Young caregivers like Kaitlyn, Joe, Riley, and Addison embody an incredible spirit of resilience, compassion, and hope as they balance their childhood with the responsibilities that ALS has brought into their lives.
Taking on Caregiving Responsibilities Beyond Their Years
Since ALS progresses differently for everyone, families with ALS often face the challenge of adjusting to daily shifts in their loved one’s physical abilities. For young caregivers, this unpredictability becomes a part of life.
“We have to open bottles and jars for him and help him around the house sometimes because he can't hold stuff correctly,” Joe said about his dad. He went on to describe how he helped him drag a large tree limb across the yard. “I just wanted to do whatever I could to help. My dad isn't as strong as he used to be, but I can be strong for him,” he explained.
Though these tasks may seem small to an outsider, they require a level of responsibility far beyond the typical responsibilities of children their age.
“So, if you think about what you do on a normal daily basis, we have to do what she would do on a normal daily basis for her,” Addison continued. “But we help her with a lot of things that she's not able to do now.”
Emotional Resilience in the Face of Change
The emotional toll of caregiving can sometimes be overwhelming, and children are not exempt from these feelings. Watching a parent lose abilities they once had can be deeply painful.
Kaitlyn and Joe spoke of how hard it is to watch some of the changes they see in their dad. “I remember going to his work. We would go to his work and give him lunch and stuff or pick him up. I remember seeing him doing the engines and stuff, but now he can't do that anymore," said Joe.
These shifts can often bring feelings of frustration and helplessness, emotions that are hard to understand at such a young age, yet these young caregivers also show incredible strength and perseverance. “It gets easier along the way, maybe not mentally but physically because then you get used to helping them. And you're used to having to get them up and down, and feeding them, and helping them around the house,” said Addison.
Finding Hope and Future Purpose in the Face of ALS
Hope plays a vital role in sustaining the spirits of these young caregivers. For Kaitlyn, hope lies in her aspirations to become an advocate for ALS families. “I want to help others know that they’re not alone, that there are people who understand what they’re going through,” she said. Joe dreams of becoming either a YouTuber or a scientist and finding a cure for ALS and could probably do both if he set his mind to it!
Addison, too, holds onto a vision of making a difference in the ALS community. “I want to be a teacher or maybe volunteer to help families with ALS.” And because of her caring nature and love of animals, Riley wants to become a vet someday.
Lessons We Can Learn from Young Caregivers
Like other young caregivers, Kaitlyn, Joe, Addison, and Riley teach us the incredible strength and resilience that can emerge even in the most challenging circumstances.
Each day they take on new responsibilities, finding ways to help their parents through love, compassion, and a willingness to grow up a little faster than they had planned to. They show us that even in the face of ALS, it's possible to find moments of joy.
When asked what they wanted people to know about their life with ALS, Addison said, "Maybe that ALS doesn't always have to be sad. You can always add a little fun to it, get some laughter out. You don't have to be sad. Try to put some fun into it. Try to get some laughs out and make memories that can last a long time.”
These young caregivers carry the weight of ALS in ways few can imagine, yet they still choose to face each day with courage, love, and hope for a brighter future. As each uniquely demonstrates, there is power in being there for those we love, and in believing that each small act of care can make a tremendous difference.
In recognition of young caregivers everywhere, we honor not only their sacrifices, but also the extraordinary love they hold for their parents. Their stories are a reminder to cherish each moment, to find joy in the small things, and to never lose hope—even when the path forward is challenging.
For children and young people facing ALS, we have developed age-appropriate resources to help them navigate the challenges they face and resources for how adults can support their youth.
LEARN MORE
We are also proud to partner with Hope Loves Company, the only national nonprofit organization serving children impacted by ALS through no-cost support, resources, and care for children ages 6-25.
Additional information and resources just for caregivers can be found on our website HERE.
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