By Daniel Otieno, Kakamega
On a chilly morning in Butere, the ACK Mother’s Union Community Hall overflowed with emotion, resilience, and a quiet determination.
What began as a modest gathering soon became a powerful call to action, a call to see, hear, and fight for children silently battling one of Kenya’s most neglected health conditions: Sickle Cell Disease.
Inside the hall, the theme “Shine the Light on Sickle Cell” hung from the walls like a beacon, urging society to look beyond the statistics and into the daily struggles of children and families living with the condition.
Organized by Don Amolo Memorial Kids Ark (DAMKA), a community-based organization, the event drew together parents, medical professionals, government officials, and children-young warriors scarred by suffering but unbowed.
Dr. Roselyne Malangachi, a seasoned pediatrician at Kakamega County General and Referral Hospital, reminded the gathering that no discussion on child health in Kenya is complete without addressing sickle cell disease.
“We cannot talk about child health in Kenya and ignore sickle cell,” she said. “These children suffer in silence. It is time we give them voice, visibility, and the medical attention they urgently need.”
She emphasized that many sickle cell warriors continue to suffer in silence because of delayed diagnoses, limited access to care, and widespread misinformation. “Parents should not wait until the child collapses to find out its sickle cell. Let’s make testing a routine, just like we do for malaria or HIV.”
Dr. Malangachi urged the government and health institutions to make early screening a routine part of maternity and pediatric care, saying parents should not have to wait until a child collapses before discovering they have sickle cell.
She stressed that integrating such tests just like those for malaria or HIV could prevent lifelong complications and deaths that were entirely avoidable.
The county government, too, acknowledged the urgency. Dr Rose Murhanda, the Acting Chief Officer for Public Health in Kakamega, commended grassroots organizations like DAMKA for stepping in where institutions had failed.
She said the county had established a Sickle Cell Centre in Mumias, which now had a second doctor to improve care delivery, saying that the county was working to decentralize services to sub-county hospitals and that Community Health Promoters would ensure earlier intervention by monitoring 100 households each.
“We honour community heroes like DAMKA who are bringing services closer to the people,” Murhanda said. “The county government of Kakamega has set up a Sickle Cell Centre in Mumias to help our children access proper medication, adding, “Every child deserves a chance to live a full life.”
Carolyne Mabunde, founder and director of DAMKA, spoke passionately about the organization’s mission and journey. She told the audience that DAMKA, established in 2012 in memory of her late father, had moved from quiet whispers to bold advocacy.
“No parent should hide their child out of fear or shame. Stigma kills and sometimes faster than the disease itself,” said Ms Mabunde
She explained that the organization had registered over 300 children from Butere and surrounding areas, providing them with emotional, medical, nutritional, and psychosocial support.
Through partnerships with stakeholders such as SolidarMed, she said DAMKA was bringing services directly to families’ doorsteps and helping them reclaim hope.
The statistics tell a sobering story: In Western Kenya, sickle cell disease affects up to 18% of the population in high-burden counties like Kisumu, Siaya, Busia, Vihiga, and Kakamega.
Across the country, more than 300,000 people live with the condition. And yet, Kenya lacks a national registry or routine newborn screening policy, leaving many families to navigate the journey alone.
