the 11th chromosome and 11,000 other things

the 11th chromosome and 11,000 other things

About the blog

the 11th chromosome is probably an insignificant chromosome, but it influences the lives of thousands of people. This blog is how to live successfully with a certain damage in the 11th chromosome, but also the other 11,000 things that life is all about.

Death of an Unknown Girl

the 11th chromosomePosted by Lamaro Schoenleber Wed, June 24, 2015 22:39:39

I have never been a full-time sickler. I never really wanted to write about or talk about or think about sickle cell anemia. I wanted to think and talk aboout everything else, except that I was a sickle cell sufferer.

And that did not change for a long time. Not even when ten-year-old Alina died - suddenly - in hospital.

I knew her family well, and I had known Alina since she was a little girl. Alina's parents were not poor. They were a middle-class Ugandan family, with both parents holding good, permanent jobs. So I had assumed that Alina would live to adulthood, because her parents had the means and the will to take the best care of her.

They could afford to buy her protein-rich food, and medicine, and make sure she had her own room (sicklers need plenty of fresh air) and employ a house helper so that she would be spared every exertion. They could take her to private health care, and the best schools.

Since her birth, Alina's older sister had always said, (when her mother was out of earshot) "Sicklers die sometime, anyway."

Alina was the youngest of three children. She and her brother had the bright, almond-shaped eyes of their mother, as well as her pleasing, nimble form. Her sister, the oldest, had inherited the nondescript looks of their kindly, pleasant-tempered, ageing father, and hair that would not grow. Her mother's relief at having a daughter who looked like herself, was compounded by the natural involved care needed to sustain a young sickler - the youngest child at that. No wonder her sister felt banned into unimportance.

Alina's death shocked and hurt me, but it did not move me to activism.

It was not unusual that one heard of sicklers who had lost the fight against the disease.



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