‘If I could die too, then I want to know’

Terri Zeferino who is raising awareness about SADS after her brother, Stephen, died of the disease.
Terri Zeferino who is raising awareness about SADS after her brother, Stephen, died of the disease.

‘Life is precious – if I can help prolong my life and those of my family and others I will.’

These are the words of a grieving sister whose 40-year-old brother died of Sudden Arrhythmic Death Syndrome (SADS) in January.

Stephen O’Connor, of Holbeach Drove, was found dead on the floor of his bedroom at his sister’s home in Chapel Drove.

Terri Zeferino (52) said she made her tragic discovery on the morning of Saturday, January 19.

She said: “Stephen was a lorry driver for Brown’s Transport at Bicker and sometimes worked 15-hour shifts.

“I’d heard him go to the toilet about 8.30am, but was then busy pottering about because I have a smallholding with animals.

“It wasn’t unusual for him to have a lie in on a Saturday to catch up with some sleep because of the long hours he worked. But when it got to 11.45am it didn’t seem right.

“I stormed through the bedroom door shouting something like ‘come on you lazy bones’, but he wasn’t on the bed.

“We are a really close, fun-loving family. We’d often hide and jump out on each other and part of me thought that was what was happening when I saw he wasn’t on the bed.

“But then I saw him lying on the floor. I was having some building work done and called the builder to help while I rang the emergency services.

“I had never seen a dead person but I saw his face was blue. The person on the other end of the phone was giving instructions on how to do cardiac massage but I knew deep down that he had died.

“It was a terrible shock because he went to the gym two or three times a week, was a non-smoker, hardly drank and played football with his seven-year-old son. They were besotted with each other – it really is heartbreaking.”

The inquest was held at Boston Coroner’s Court on Thursday, when deputy coroner Siobhan Kelly recorded a verdict of “natural causes” after an extensive examination of Mr O’Connor’s heart revealed nothing abnormal.

Present to support Mrs Zeferino and raise awareness of SADS was Anne White, a British Heart Foundation cardiac genetics nurse with the regional family cardiac screening service at Papworth Hospital in Cambridgeshire.

Mrs White said: “We don’t have the perfect test. Finding a gene fault can be as difficult as looking for a spelling mistake in a room full of books written in a foreign language.

“If we find a clue, it’s like looking for a spelling mistake in a room full of books written in English – tricky but possible.

“Then we can refer someone for genetic testing.

“After someone loses a member of their family like this, the uncertainty can add to the stress.”

Mrs Zeferino, who is undergoing screening with other members of her family, said it was important to her to find out whether she had an abnormality that could lead to her own death.

She said: “I’ve never thought ‘I don’t want to know’. Life is too precious.”