Duchenne Stories in Kenya

Our project was a collaborative effort with The Everett and Austin Project, in support of DMDFK Kenya, to raise awareness about Duchenne Muscular Dystrophy (DMD). DMD is a rare and severe genetic condition primarily affecting individuals assigned male at birth. Globally, fewer than 10 cases occur per 100,000 individuals assigned male at birth, and dystrophy disorders as a whole affect approximately 1 in 5,000 to 1 in 6,000 in this group. Despite its rarity, DMD has a profound impact on the lives of those diagnosed and their families, particularly in regions with limited resources for diagnosis, treatment, and support.

Our goal was to give a voice to the children and families affected by this condition in Kenya by documenting their unique stories. Over the course of the project, we visited families across the country and filmed 10 powerful and heartfelt stories. These stories highlighted the challenges faced by the children living with DMD, including physical, emotional, and economic struggles, while also showcasing the resilience and love of their families.

The videos we produced served as a medium to spread awareness about DMD, educate the public, and advocate for better support systems for affected families. By shedding light on these lived experiences, the project helped bridge the gap between awareness and action, ensuring that the voices of these children and their families were heard both locally and globally.

This initiative demonstrated the power of storytelling to inspire empathy, encourage support, and drive meaningful change for communities affected by rare conditions like Duchenne Muscular Dystrophy.

This project was a collaboration between The Everett and Austin Project and DMDFK Kenya to raise awareness about Duchenne Muscular Dystrophy (DMD). DMD is a severe genetic disorder primarily affecting individuals assigned male at birth, with fewer than 10 cases per 100,000 globally. Families in Kenya face significant challenges due to limited access to medical care and awareness about this condition.

Our aim was to share the lived experiences of affected children and their families, highlighting their struggles and resilience while advocating for better support systems.

We began by identifying families living with children diagnosed with DMD in various regions of Kenya. Each visit involved capturing their day-to-day experiences through video interviews, candid footage, and conversations with caregivers.

Our team carefully edited these stories to emphasize the personal and emotional dimensions of living with DMD. These videos were distributed as part of awareness campaigns run by DMDFK Kenya and The Everett and Austin Project to educate the public and inspire advocacy.

DMD is a rare and progressive genetic condition, leading to muscle weakness and loss of mobility. The disorder disproportionately affects children in low-resource settings due to late diagnoses and minimal access to treatment. This project aimed to humanize the condition by showcasing 10 real-life stories, breaking the stigma around disabilities, and encouraging systemic change in healthcare and community support.