A Newcastle man's family say they have been "saved" after his sudden death alerted them to a heart condition that runs in their family.
It was assumed Gary Anderson was in good health, but he suddenly died one afternoon whilst working at his computer. After fighting for tests, it came to light that the 31-year-old was living with an undiagnosed heart condition - Brugada Syndrome.
His 64-year-old mum Valerie, and his youngest sister Jacqui, 29, from Cramlington, say that Gary died to allow them to live - with his mother also being diagnosed with the rare condition following his passing. She now wears a pacemaker, with her daughter believed to also be borderline, with further monitoring of the condition needed.
Gary, who worked for Sky in Newcastle, was found slumped over his desk on June 13, 2020, by his flatmates. They attempted to resuscitate him before paramedics arrived - but Gary was sadly pronounced dead at the scene.
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The Mirror reports that while Gary loved his job and thrived at it, his family reveal that his real passion was music - and he would spend many an evening and weekend at live performances. He even performed on stage with Westlife in 2007 aged 18.
Since his death, his mother has joined forces with other bereaved mums, all of which have lost children in the same way. They have partnered up with CRY -Cardiac Arrest in the Young - which supports youngsters who are diagnosed with potentially life-threatening cardiac conditions, offer bereavement help to families, and promote and develop heart screenings.
They are releasing one of Gary's songs, named Opinions, to raise awareness of heart attacks in the young. Each week across the United Kingdom, 12 people under the age of 35 die from an undiagnosed heart condition, very commonly caused by an inherited heart muscle disease - otherwise knowns as a genetic cardiomyopathy.
The mothers are also calling on the Government and the NHS to introduce heart screenings for everyone when they turn 14. Valerie said: "The shock and the horror together with the uncontrollable crying throughout that night and ever since then - it does not get any easier for anyone.
"It has been two years now, it just doesn’t seem real. I’ve had to lose Gary to find out I’ve got it [Brugada Syndrome]. I was really upset when I found out and I thought I've had to lose him in the process - I just hope something comes of this."
Her daughter, Jacqui, adds: "This could have been prevented if there was a national rollout of screening. Gary has managed to save all of our lives, we wouldn't have known otherwise."
The weeks that followed Gary's passing were difficult for the family - not only due to the loss of a beloved family member, but also with the burning question of why, with coroner report tests coming back negative. "At this point, Gary was heavily into the gym, and depending on his shift, would go before work or at lunch," Jacqui explains.
"He was really into fitness. There was nothing you could have said 'this is why it’s happened.'"
Due to the unusual circumstances of his death, the whole family have had to have heart screenings at hospital - but after appealing the coroner's report, they fought to see a specialist who discovered a genetic defect. All those with genetic cardiomyopathies have a 50/50 risk of passing faulty genes onto their children - and often, several members of the same family develop heart failure, require a transplant, or die at a young age.
Valerie's brother is waiting to be tested as it stands, but his son, who lives overseas and has decided to pay privately for tests, has discovered that he has Brugada Syndrome. The rare but serious condition affects how electricity signals pass through the heart, and can cause it to beat dangerously fast.
Jacqui feels like she is in limbo after being told that there is a possibility that she may also develop the syndrome, but as it stands she has received a clear result. She now lives in fear of overexerting herself.
"I wanted to do the Great North Run in memory of Gary but was recommended to not do it," the nurse practitioner says. "I'm worried about having children."
She admits: "I would never want this on my worst enemy. You’ve got to really fight to be checked and for treatment, which is just bizarre.
"I know the NHS is in a crisis, but to me, it’s a no-brainer for screening for everyone. People should be getting tested, it should be a national rollout like with the coronavirus vaccine. I know it’s expensive but it’s so common and seems to be more prevalent in males."
Aged 10, Gary discovered a keen interest in music and his mother says that he learned to play guitar while also writing his own songs. He played his first local gig at the Three Horseshoes when he was just 12, and from thereon played at venues across the region.
He would go on to study performing arts in Newcastle, and in 2007, aged 18, came third in the Eddie Stobart Factor talent competition - where he played his own music at Bitts Park Carlisle in front of 20,000 people alongside Westlife.
Valerie recalls: "One of his tricks was playing electric guitar behind his head. It was his dream to release his own music."
Jacqui adds: "He knew he had to work but music was his absolute passion, he couldn’t go anywhere without listening to music. He influenced who I listened to - we all have such diverse music tastes because of him."
The group of mothers are releasing the track through EmuBands, which offers unsigned artists and independent labels a way of selling their music online. They hope proceeds will be able to pay to set up a trust in Gary’s name to support up-and-coming musicians.
Their campaign comes at a time when scientists have recently said they are just a few years away from curing genetic heart conditions, which affect around 260,000 people in the UK. An international team of researchers is coming together for cutting-edge science after being awarded £30m by the British Heart Foundation (BHF).
They will develop the first cures for inherited heart muscle diseases by rewriting DNA with the aim of editing or silencing faulty genes.
The hope for the CureHeart project is that within just a few years a 'cure' injection can be delivered to patients as a jab in the arm, and could be used to prevent illness in family members who carry the same faulty gene. In the coming weeks, as Parliament returns from recess, the mums will be writing to the Health Secretary to demand change with screenings.
A Department of Health and Social Care spokesperson said: “The unexpected death of any young person is always a tragedy.
“The UK National Screening Committee reviewed screening young people for sudden cardiac death in 2019. They found there was insufficient evidence to support the introduction of whole population screening in the UK. However, this issue is kept under review; the Committee is due to complete its next review of screening for Sudden Cardiac Death by 2023."
Listen and download Opinions - Gary Anderson on SoundCloud https://soundcloud.app.goo.gl/LL4n5 and Bandcamp https://garyanderson2.bandcamp.com/releases.
You can donate to CRY here https://www.c-r-y.org.uk/donate/
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