Enough people have died needlessly so far. It's time it stopped

Neil Halliday

After a doctor in Australia diagnosed the rare heart disorder in a member of the younger generation, Mr Halliday realised the family carried a life-threatening inherited rogue gene.

His brother Kevin, sister Yvonne, mother Phyllis Gorry and other members of the family were victims of Long QT syndrome - a type of sudden adult death syndrome.

Yvonne died aged 21, his brother Kevin was 16 and his mother died at 30.

The family refers to the condition as the "Gorry Curse" because it is Phyllis Gorry's line which carries the rogue gene.

Global challenge

Mr Halliday said: "The mission is to find all the distant relatives so that they can be on the alert and know what to look for if the signs appear.

"The intention is to make sure they don't die needlessly.

"Enough people have died needlessly so far. It's time it stopped."

Neil Halliday is trying to trace all family members

But his task may be difficult to accomplish.

His mother was one of 15 children and relatives are strewn across the globe.

The story of the Gorry Curse is taken up in a new five-part series on BBC2, later this month.

Perhaps the most difficult job is tracing the illegitimate son of his mother's youngest sister 56-year-old Michelle.

The baby was adopted, aged six weeks, when Michelle was just 16.

She said: "I need to find him now as soon as possible because of the seriousness of this genetic disorder and I know it's going to be heart breaking for him, for me, for his parents, his wife, whoever."

Misdiagnosis

She has employed an independent people finding agency to help with the search.

A doctor in the UK is now trying to find the rogue gene responsible for Long QT syndrome.

The inherited condition is a disorder of the electrical system of the heart caused by a malfunctioning protein.

Children and young adults are most at risk and may experience attacks of fast heart rhythm.

Kevin Halliday died aged 16

They can collapse or die during attacks when the rapidly beating heart is unable to supply the brain with sufficient blood and oxygen.

Neil's brother Kevin and his mother's brother, also called Kevin, both died while swimming and experts say exercise is one of several possible triggers of the condition.

Neil's brother Kevin and another member of the family who died from the condition were misdiagnosed with epilepsy.

Long QT syndrome is thought to affect one in 10,000 people and can be treated with beta-blockers - generally used to treat high blood pressure and heart failure.

Some patients may require other drugs and on rare occasions the insertion of a pacemaker or implantable cardioverter defibrillator may be necessary for those at high risk.

The first episode of Bitter Inheritance starts on 10 January at 2150GMT on BBC2.