In Zimbabwe, a silent epidemic is claiming the lives of children. Fanconi Anemia (FA), a rare genetic disorder leading to bone marrow failure, is more than just a medical term—it’s a harsh reality for families grappling with the disease’s devastating impact.
Sylvia Sanyanga, the founder of The Nate Foundation, shares her poignant journey, “In the past few months, we’ve lost four precious souls to FA or leukaemia.”
Despite successful bone marrow transplants, the underlying condition remains, leaving children like Nathan, born with multiple physical anomalies due to FA, to face ongoing challenges.
“Blood issues are real, and we do have children who suffer from these here in Zimbabwe,” says Sanyanga.
The Nate Foundation, named after Sylvia’s children, has been a beacon of hope, assisting families in seeking treatment abroad.
Sanyanga recounts the heart-wrenching stories of Panashe and Lennon, two children who lost their lives despite efforts to undergo bone marrow transplants in India.
The lack of sibling matches and the body’s rejection of new cells highlight the complexities of treating FA.
The prevalence of FA in Zimbabwe is higher than previously thought, with a common mutation found in 82% of FA patients in Southern Africa.
Globally, FA occurs in 1 out of every 100,000–160,000 people, with a higher incidence in certain populations. These statistics underscore the need for increased awareness and resources to combat this disease.
The government and private sector’s role in combating FA cannot be overstated. While organizations like The Nate Foundation are pivotal, they operate with limited funds and rely on community support.
The emotional toll on families is immense, as Sanyanga describes walking the silent corridors of Parirenyatwa Hospital, witnessing the pain of loss and the unwavering hope of parents seeking a miracle for their children.
“We get involved with their families so much that they become part of our family too,” she reflects.
“We need a concerted effort to prioritize FA. It’s not just about treatment; it’s about inclusive education and support systems,” Sylvia emphasizes.
The journey is personal for Sylvia and her husband, Eddie. They’ve transformed their struggles into advocacy, establishing Caterpillar Clubhouse, a preschool fostering inclusive learning.
“Nathan was once denied a preschool spot due to his special needs. We created a space where children like him can thrive without feeling different,” Sylvia explains.
The narrative of FA in Zimbabwe is one of resilience and unity. As Sylvia poignantly puts it, “We keep hope and faith alive, even in the face of adversity. Our calling is hard, but we will continue to fight for these children, ensuring their stories are heard and their lives celebrated.”
As the international community observes, it’s clear that Fanconi Anemia is not just a medical challenge but a societal one that calls for global solidarity and action.
The time to act is now, to ensure that no more lives are lost in silence.
