A mother sat in the hospital, cradling her two children, overwhelmed by the painful knowledge that she never asked for them to be sick. Parenting two young children with sickle cell anemia is a relentless struggle, filled with hospital visits, financial strain, and emotional turmoil. Her daughter, five years old, and her son, just over a year old, fight daily battles against the disease, which has stolen so much of their childhood.
Her journey began when her daughter was nine months old and frequently fell ill. Despite multiple attempts to understand what was wrong, the answer remained elusive. After several hospital visits, doctors confirmed that her blood levels were dangerously low, and she was diagnosed with sickle cell anemia. The diagnosis was confirmed at great financial cost, but there was no other option.
The realization was devastating. Sickle cell anemia did not seem to run in her family, yet the doctor explained that it was genetic. She now believes the trait may have come from her late grandmother, who had long suffered from body aches and severe headaches but never sought medical help.
Caring for her daughter meant constant hospital visits and medication routines, including hydroxyurea, folic acid, and zinc. The costs were significant, with each clinic visit requiring consultation fees and lab tests that drained her finances. The situation became even more overwhelming when her second child was diagnosed with the same condition. Medication alone cost her thousands each month, forcing her to space out clinic visits as much as possible.
Her husband initially refused to accept their daughter’s condition, causing tension in their relationship. She faced the burden alone, attending hospital visits and absorbing the crushing weight of the diagnosis. Eventually, after the birth of their second child, her husband accepted the reality, but by then, their relationship had deteriorated, leading to separation.
Another mother lives in a modest home with her two surviving children, a 17-year-old daughter and a 7-year-old son, both battling sickle cell anemia. She also carries the memory of her 12-year-old son, who tragically lost his life during the 2024 protests. Her daughter, diagnosed at five, internalized the doctors’ grim prognosis and would wake up each day asking if it was the day she would die. The disease has not only weakened her body but has also taken a toll on her mental well-being.
Her first husband denied the children and refused to take responsibility, but her second husband stood by her, accepting her children and supporting their medical needs. Despite this support, accessing medication remains a challenge. She relies on Vitaglobin, which costs Sh400 per bottle and is often financially out of reach.
Sickle cell disease is a significant public health concern, with thousands of children born with the condition each year. Without intervention, many do not survive past their fifth birthday. The disease is more prevalent in areas with high malaria transmission, such as western Kenya, where a significant percentage of children are affected.
Efforts to address the condition include initiatives like the “Sickle Cell Diseases Afya Dhabiti Project” and national guidelines emphasizing newborn screening. Despite these steps, challenges persist, including limited awareness, inadequate diagnostic facilities, and insufficient access to comprehensive care.
One of the most promising treatments is a bone marrow transplant (BMT), which involves replacing defective bone marrow with healthy stem cells from a matched donor. The procedure, while effective, is not suitable for all patients and is primarily recommended for those with severe complications. Finding a fully matched sibling donor significantly improves the chances of success, though the process is complex and costly.
Sickle cell anemia remains a difficult journey for families, with daily struggles that encompass emotional, financial, and medical challenges. Yet, amid the pain and hardship, these parents continue to fight for their children’s survival, hoping for better access to care and long-term solutions.
