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Sickle Cell Disease: “a family affair”

A Friday morning at 11 o’clock. I’ll never forget! A voice said ‘I’m sorry your son is suffering from the most severe form of sickle cell disease, homozygous SS. You should take him immediately to hospital,” explains Jenny. Taylor was nine months old.

Jenny couldn’t imagine a worse diagnosis or a worse way to receive it. “It was said these children did not reach the age of five, so I thought I might as well end it there and then,” she says. The family lived on the sixth floor and Jenny thought the only one thing to do was to take her son in her arms and jump. But when she saw him smiling at her from his cot she decided she was going to fight for him instead.

“Sickle cell disease in our house has become a family affair: not only my husband and our other children, but my brothers, sisters, my mother, my mother-in-law, everyone is fighting with us,” says Jenny.