Silent Crisis: The Story of Tuke Sonaike
The Story of Tuke Sonaike: A Proud Mother, Fighter, and Sickle Warrior
My name is Tuke, I’m a single mother to a beautiful 17-year-old daughter and a proud woman of Nigerian heritage. I’ve worn many hats throughout my life, community enthusiast, development worker, caregiver, and now, a medical leave warrior, navigating a complex path marked by one constant: my battle with Sickle Cell Disease (SCD).
I was diagnosed with Sickle Cell Disease at just 10 months old. From that moment, my life was charted on a very different course. Growing up, I constantly felt the weight of being “different.” While my peers were playing carefree, I was in and out of hospitals, dealing with painful crises that became my version of a day out. As a child, I did not fully understand what’s happening, but deep down, I knew my life didn’t mirror others.
There was a stark lack of education and awareness surrounding my condition, this ignorance breeds stigma, fear, and at times, hurtful treatment.
Diagnosed Before My First Birthday
There was a stark lack of education and awareness surrounding my condition, both in society and even within parts of my own extended family. This ignorance bred stigma, fear, and at times, hurtful treatment. I remember being told I wouldn’t live past the age of 7. When I did, the goalpost moved to 13, then 18, and eventually 21. Even dating came with unsolicited warnings: “She’s high maintenance,” “She won’t live long,” “She’s contagious.” The words stung. But over time, I learned to blame ignorance, not the people.
Carried by Love, Knowledge, and Friendship
Despite the challenges, I’ve always considered myself one of the lucky ones. I was born into an educated family, the youngest of 12 children. Yes, the last born in a big, beautiful Nigerian family. One of my older sisters also has SCD, so in some ways, we journeyed through this life hand-in-hand.
What my family didn’t know, they were determined to learn. My parents explored every treatment, every herbal mix, every bitter-tasting potion in a desperate attempt to help. Some remedies were questionable (and vile!), but the love behind them was never in doubt. My parents passed away in 2001 and 2002 respectively, but their legacy of curiosity and compassion lives on.
Alongside my family, I had a network of divine friendships, people who saw past my illness and into my soul. Some of these friends have been in my life since childhood in Nigeria and remain with me now, decades later, in the UK. They are my chosen family, my unwavering support system. Without them, I may not have had the strength to keep going.
The Daily Reality of Sickle Cell
Sickle Cell isn’t just a condition; it’s a lifestyle. It shapes everything, your energy levels, your plans, your relationships, your dreams. My health challenges eventually meant stepping back from work. Up until COVID-19, I ran my own community interest company. More recently, I served as a community development worker until I was placed on medical leave.
Living with SCD means dealing with the unpredictable. Some days, I can function. Other days, the pain is immobilizing. My daughter, thankfully, inherited more of her father’s genes and only carries a slight trace of the sickle gene. Still, she’s grown up with a front-row seat to my fight and for that reason, she understands resilience like few teenagers do.
