A grieving mother has called for more research into the ‘extremely rare’ genetic disorder which restricted the growth of her 26-year-old son and baffled doctors investigating how he died.
Spencer Jordan was found unresponsive by mum Tracey in the bedroom of the home they shared in Bolton on September 1 last year.
Tracey told the Bolton inquest that Spencer suffered from chromosomal abnormality ‘deletion 2’, which meant his development was delayed and resulted him being small in stature.
Pathologist Dr Patrick Waugh and consultant cardiologist, Prof Bernard Clarke, told assistant coroner for Manchester West, Catherine Cundy, that Spencer’s condition was ‘extremely rare’ with only about 17 cases known to the medical world.
Both doctors said they had little to no experience of the disorder and said there was ‘not a great deal of research’ into the problem available to the medical community.
Concluding the inquest, Ms Cundy agreed with both doctors’ belief that Spencer’s passing was probably caused by ‘sudden arrhrythmogenic death syndrome attributed to his underlying chromosomal abnormality’, where the heart stops beating.
Tracey told the hearing that despite his medical problems – including severe curvature of the spine which resulted in surgery – Spencer lived ‘a full and happy life’.
Spencer would attend a day centre in Halliwell three days a week.
He had just begun attending the centre regularly again following the Covid lockdowns.
On the day he died, he returned home laughing and ‘in a good mood’ when he came home, said Tracey.
“He had his tea and went up to his bedroom to chill out,” said Tracey. “He would often have a nap in the evening.”
But when she entered his bedroom at the Winster Drive, Bolton, home to check on him he was lying in an unusual position and was unresponsive.
Tracey called for an ambulance and, instructed by a call handler, carried out CPR on her son, but he was later pronounced dead at the scene.
Speaking after the inquest, Tracey told the Manchester Evening News: “I raised Spencer on my own and he was character, loved by everyone who knew him."
And she added: “I feel now it would appropriate for there to be some investigation and research into the chromosomal abnormality that he suffered from, bearing in mind that it is so rare.
“Even two highly experienced and qualified doctors have found it challenging to come up with a reason for his death.”
