Her tragedy led to a medical marvel
WHEN I think about my dear sister now, the thing that stands out most is how brave she was. She and her husband endured great tragedy when they lost two of their children to an inherited genetic disease, yet they channelled their profound grief into doing everything they could to understand the condition, advancing medical understanding in the process.
Sheila always was a determined girl. Three years older than me, she was a friendly and outgoing child who did well at school, while her natural ease with people made her an ideal fit for one of her first jobs as office manager of an exclusive private members club in London’s West End.
Called The 21 Club, it was a favourite of film stars and royalty, among them Judy Garland — who Sheila recalled seeing in quite a drunken state — and Princess Margaret, who was such a regular, too, that the club had a sofa with her name on it.
It was a colourful time: Sheila recalled that the Italian chefs at the club were particularly temperamental and it wasn’t unusual for them to chase her around with a knife if she had done something that displeased them.
Sheila worked at The 21 Club until she got married to her beloved husband Philip — later Dr Philip Koch — who would go on to become one of the country’s most eminent pathologists.
Alongside Harold Pinter and Lord Peston, father of the presenter Robert, Philip was a classmate and close friend of mine at Hackney Downs grammar school, and he and Sheila had been friends since their early teens. Theirs was an enduring love story and their marriage lasted 65 years.
The newlyweds settled first in Southgate and then Stanmore where, in 1959, their son Howard came along. Sheila proved herself a first-class mother, yet no one could prepare the couple for what was to come next. While they were delighted when Sheila gave birth to a daughter, Gail, it quickly became clear that she was not developing as she should.
Further tests showed that Gail had TaySachs syndrome, a terminal genetic disorder that results in the destruction of nerve cells in the brain and spinal cord and about which little was known at the time. It claimed the life of Gail and the couple’s third child, Shelley, before their fourth birthdays. Sheila wasn’t one for self-pity and both she and Philip were determined that this shouldn’t happen unknowingly to others. With Sheila’s support, Philip switched his scientific research to enzyme deficiency disease, which in time allowed him to devise a screening test to detect unaffected carriers of Tay-Sachs syndrome that is still used today. Sheila, meanwhile, developed her own enormous knowledge and together the couple travelled all over the country to give support to the parents of other sufferers. Sadly in her later years she suffered from Alzheimer’s, through which Philip nursed her tirelessly. It says much about our own bond that although she stopped recognising most people, she always knew who I was. She will be forever in my thoughts. sHEila KocH, born March 15, 1926, died May 1, 2018, aged 92.
MY SISTER SHEILA