In 2008, my son Meshack was born. From his earliest days, he was often unwell, and as parents we struggled to understand why. The frequent hospital visits, sleepless nights, and endless questions weighed heavily on us. It was not until 2011, after a visit to Aga Khan Hospital, that a doctor suggested we test him for sickle cell. I still vividly remember the anxious wait for the results, only to be told that Meshack had sickle cell disease. That day changed our lives forever.
The journey since then has been tough, marked by numerous hospital admissions, missed school days, and the constant emotional and financial strain of managing this condition. Yet through it all, Meshack has shown extraordinary courage and resilience.
One year stands out in particular — 2017. Meshack developed severe complications that saw him rushed into the ICU. Those were some of the darkest days of my life, but by God’s grace he recovered. Just like his biblical namesake, Meshack has walked through the fire and emerged stronger.
Today, Meshack is 17 years old. He continues to inspire me with his strength and determination. Earlier this year, we were advised that he needs to undergo hip surgery — a heavy burden for one so young. I encouraged him to first focus on completing his Form Four exams, after which we will revisit the surgery.
Living with sickle cell has opened my eyes not only to my son’s struggles but also to the wider challenges faced by families living with this condition. One of my greatest concerns is how insurance companies categorise sickle cell as a congenital condition, often limiting coverage. To me, this disease should not be treated that way. Families deserve equal access to healthcare support, just as with any other chronic illness.
Despite the challenges, I cannot forget to acknowledge those who have walked with us on this journey. My parents, my brothers, the Aga Khan University, Accacia Crest School and Minet have been true pillars of support. Their love and encouragement have helped us carry this burden with faith and hope.
And as we mark Sickle Cell Awareness Month this September, my prayer is for strength and courage for all families going through this journey. Many children like Meshack continue to live with resilience, reminding us every day that sickle cell does not define who they are but rather reveals just how strong they can be.
Sickle cell disease remains a major public health concern in Kenya, with an estimated 14,000 children born each year with the condition and thousands more living with its complications. Yet awareness, early diagnosis, and access to proper treatment remain limited, particularly in rural areas. Advocacy groups continue to call for better healthcare policies, wider access to affordable medication, and stronger insurance coverage.
Families like mine should not have to fight two battles — one against the disease itself and another against systemic barriers to care. Meshack’s story is just one among many, and it is my hope that Kenya will strengthen its commitment to supporting all those living with sickle cell.
[The writer, Wycliffe Okola, is the Assistant Manager for Operations in Minet Kenya’s Employee Benefits Division]
