17
A house, a home, a heartache. This is a story about love, grief and chance.
It all began over a cup of coffee at the end of November 1966, when my mum, Pauline, met my dad, Mike. Things went so well that by the following February they were married. Yet in one sense the chances of them ever meeting at all were around 0.0025 per cent - because both of them were carriers of an ultra rare genetic condition called Pompe Disease. My parents knew nothing about this until they started a family.
I am the eldest, born in 1970. In a genetic lottery like this there are three possibilities, and I got the luckiest third. My genes are totally unaffected. Mum and dad had one faulty gene each, which turned out to be a missing enzyme on chromosome 17. My younger brother and sister, however, inherited both sets of faulty genes, which was to prove fatal.
Rupert was born in 1973 and died later that year. Caroline was born in 1974 and died in 1975. Both were under a year old. Their deaths were sudden and, at the time, unexplained: Fewer than 10,000 people in the world have Pompe.
Among my earliest memories are: The day my brother died, being told about my sisters death and her funeral. Finally our family got some answers after being referred to the genetics clinical at Great Ormond Street in London. We became a close family of three, and, for a time, a medical curiosity. Somehow my parents got through, but the grief remained.
Five days before Christmas 2020, my dad died. My mum had died three years previously. Now I had the task of clearing the family home, the house that my parents had moved into in 1967, and which they had never left. I had wanted to tell this story for years, but somehow I was unable to begin: Until now. Now I had permission to tell it from my perspective, and I realised that the house was both a vehicle and a metaphor to do this.