The Girl who lived on Tempest Street

The Girl Who Lived on Tempest Street: A Tragic Tale of Sickle Cell

Photo by Jessica Felicio on Unsplash

Today, I discovered the heartbreaking news of a young girl’s passing

She lived in London and she had Sickle Cell. She had been battling with this genetic condition for all of her life.

She was only 14 years old. I never knew her personally in fact I know her story via my mother.

For the sake of this story, let’s call her Queen, as her name is the name of a real ruling Queen.

I first heard about Queen when she was much younger. I remember my mum telling me about her, ‘ theres a young girl with Sickle Cell that lives down the road. I remember mum telling me her mother was always looking anxious and stressed, almost far away — always a distant look in her eyes. Queen was always falling sick, suffering with painful sickle cell crisis. Queen also used to eat mud, a condition called PICA, a psychological eating disorder which we know now is associated with Sickle Cell. Approximately one — third of patients with Sickle Cell will develop PICA behaviours.

Sickle Cell is a genetic blood disorder that causes the red blood cells to become crescent-shaped, hindering blood flow to vital organs. The resulting pain has been likened to a continuous hammering or an elephant sitting on one’s chest. Women with Sickle Cell have described the pain as worse than childbirth. This excruciating pain can strike randomly, necessitating medical attention. Unfortunately, viable cures for Sickle Cell are few and far between. Shockingly, a recent report titled The “No One’s Listening” report, published by the APPG on Sickle Cell and Thalassaemia and the Sickle Cell Society, shed light on the neglect of Sickle Cell patients within the UK healthcare system, citing inadequate training, subpar care, and racial biases.

Despite never meeting Queen, I feel an inexplicable connection to her. My mother would update me whenever she crossed paths with Queen and her mother. I could gauge how she was doing based on changes in medication or new treatments. For a while, things seemed to be improving for Queen — no reported pain and she even started secondary school. My mother would often catch sight of her, backpack slung over her shoulders, walking to school. “Lovely girl,” my mother would say.

Recently, my mother noticed Queen carrying an excessively heavy backpack, causing her to walk with a hunched posture. She made a mental note to discuss this jokingly with Queen’s mother — advising that she needs to lighten the load & why so many heavy books. However, when the opportunity arose, she received the devastating news that Queen had since passed away.

The shock and grief were overwhelming. What a tragic loss. In that moment, I caught a glimpse of the challenges I know from my own experience of a mother whose child was diagnosed with Sickle Cell that Queen must have faced. Navigating the challenges of home, school, emotions, and friendships. Surviving scorching summers where hydration is paramount, or enduring bone-chilling winters in the UK that exacerbate the deep pain within. Her journey must have been filled with moments of loneliness.

The story of the girl who lived on Tempest Street serves as a poignant reminder of the resilience and strength required from a child to bear the weight of a difficult condition. The hardships faced by those with Sickle Cell and the urgent need for heightened awareness and better care. Queen’s legacy should inspire us to address the inadequacies and biases within the healthcare system, ensuring that no more lives are lost to this overlooked condition.

Gene Therapy has just been approved in the UK as a potential cure for Sickle Cell. This is good news, we await news on access, funding and eligibility.

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Thank you

Funmi V x

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