Gary Anderson's family thought he was fit and healthy, but he died suddenly one afternoon whilst working at his computer. After fighting for tests to be had, it transpired that the 31-year-old had an undiagnosed heart condition - Brugada Syndrome - which they now know runs in the family.
His mum Valerie, 64, and his youngest sister Jacqui, 29, from Cramlington, Northumberland, say that Gary died for them to live - as since his tragic death, Valerie was diagnosed with the rare condition and wears a pacemaker, while Jacqui is believed to be borderline, with further monitoring required.
The beloved son, who worked for Sky in Newcastle, was found slumped over his desk on June 13, 2020 by his flatmates. They tried to resuscitate him until the paramedics arrived but he was pronounced dead at the scene.
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While he loved and thrived in his job, his family say his real passion was music, and would spend evenings and weekends at live gigs. In 2007, at the age of 18, he even performed on stage with Westlife.
Since his passing, Valerie has joined forces with other bereaved mums, who have lost children in the same way, with the help of CRY - Cardiac Risk in the Young - a charity which supports young people diagnosed with potentially life-threatening cardiac conditions, offers bereavement support to families, and promotes and develops heart screening.
They are releasing one of Gary's songs, named Opinions, to raise awareness of heart attacks in young people.
Every week in the UK, 12 people under the age of 35 die of an undiagnosed heart condition, very often caused by an inherited heart muscle disease, also known as genetic cardiomyopathy.
The mothers are now calling on the government and the NHS to introduce heart screenings for everyone at the age of 14.
"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," Valerie says, on the evening she found out her only son had died.
"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."
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."
It was a difficult time for the family in the weeks after his passing - not just because of what had happened, but the burning question of why, as coroner report tests came 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 circumstances of his death, all the family members had to have heart screenings in 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 on to each of their children and, often, several members of the same family develop heart failure, need a heart transplant, or die at a young age.
Valerie's brother is waiting to be tested but his son, who lives overseas and paid privately for tests, has discovered he has Brugada Syndrome - a rare but serious condition that affects the way electrical signals pass through the heart and can cause the heart to beat dangerously fast - too.
However, Jacqui feels like she is in limbo after being told there is a possibility due to her blood type but had a clear result.
She 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."
At the age of 10, Gary discovered an interest in music, Valerie says, and learned to play the guitar both acoustic and electric, while also writing his own songs.
He played his first gig at their local The Three Horseshoes pub when he was 12-years-old and from thereon, played across venues in the northeast.
Gary went on to study performing arts in Newcastle and in 2007, at 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.
"One of his tricks was playing electric guitar behind his head," Valerie recalls.
"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 £30 million 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 hear out their call and 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 by Gary Anderson - Original Acoustic 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/
Do you have a health story to share? Please get in touch at saffron.otter@reachplc.com
