Patient Stories
Katie-Beth’s Story
In August of 2019, I became very sick, which began a long and difficult medical journey. After many doctor visits and tests, I was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA), a rare condition that affects my joints, muscles, organs, immune system, and more. This disease causes my immune system to attack my own body, leading to pain, fatigue, fevers, rashes, and other symptoms.
Throughout my treatment, Child Life Specialists played a huge role in helping me cope with the stress and fear of being in the hospital. They provided not only comfort and support, but also emotional care that helped me manage fear and anxiety. Through creative play, distraction, and simply being there, they made the hospital feel less scary and more manageable.
During the first year after my diagnosis, I went to the Children’s Hospital of Richmond at VCU every other week for infusion treatments. During that time, I was consistently supported by the hospital’s Child Life Specialists. They helped turn each infusion into something I could get through by offering activities, distraction tools, and emotional support. Their kindness and care made a world of difference during some of my toughest moments.
During my infusions, Child Life Specialists used different tools to help me get through each treatment. Sometimes it was simple things like crafts, games, or activities that distracted me and helped pass the time. Other times, it was just having someone sit with me, talk to me, and make me feel more comfortable in a place that could feel overwhelming.
I remember times when I felt especially nervous or unsure about what was happening, and they would take the time to explain things in a way I could understand or help me focus on something else.
Those moments made a big difference and helped me feel calmer and more supported.
Without Child Life Specialists, my hospital experience would have felt much more scary and overwhelming. Having their support helped me feel less alone and gave me something to look forward to, even on difficult days.
Because of them, I realized how important this kind of support is for children going through medical challenges.
That is what inspired me to create Joy for Little Lives.
My goal is to help make sure every child has access to the same comfort, support, and moments of joy that helped me through my own journey. Through our work, we provide Child Life Specialists with the resources, toys, and tools they need to support children and families during medical care, so no child has to face these experiences feeling alone.
Mission Statement:
At Joy for Little Lives, we raise awareness of the vital role child life specialists play and provide them with the tools and resources they need to bring comfort, hope, and moments of joy to children receiving medical care. Together, we help transform fear into courage and hardship into healing. We envision a world where every child feels safe, supported, and joyful, no matter what they face — and where every child life specialist has what they need to make that possible.