How an Unthinkable Tragedy in Glasgow Saved 18 Young Lives
Like most Glasgow teenagers, Taylor Muir loved makeup, nice clothes and getting her hair done. If she wasn’t playing dress up and taking photographs, she was devoting her time to helping others.
When her elder sister Jodie died at just 16 from an undiagnosed heart condition, Taylor worked tirelessly alongside her mum to launch the Jodie Muir Memorial Trust, raising thousands of pounds to fund a heart screening programme for school kids.
But then, just a week after her mum received an award for the money raised in memory of Jodie, Taylor’s own life was cut short. She was 14, killed by Long QT, the same genetic disease that claimed Jodie two years earlier.
Laura McArthur, mum to Taylor and Jodie, says she lives with the loss of her girls every single day.
“You never get over it,” Laura tells Glasgow Live . “You can learn to live with it, but the only way I can do that is to make sure my girls didn’t die in vain.”
Laura is to host a fundraising day next month to raise money to fund a screening programme that will allow all school kids in Scotland receive a simple ECG test that can detect or flag-up potential abnormalities of the heart. It takes minutes to carry out but could save countless lives across Scotland.
Currently, there is no infrastructure for a national screening programme. Laura says the government are refusing to fund further screening and research while as the “death toll isn’t high enough” to justify the spending. Laura argues that the impact of bereavement on families has its own price. “One death is enough,” she says. “And in my case two. Two in two years. How can you tell me that’s not enough death?”
The Jodie Muir Memorial Trust funds free heart tests through the Cardiac Risk in the Young (CRY) charity. It costs around £16,000 for every 200 children. Laura believes that with her own equipment, and time volunteered from a local cardiologist, she can reduce the cost to just £65 a child.
“It’s simple - any abnormalities show up right away and the test takes just a few minutes,” says Laura.
“It’s so worth it, in the first few hundred screenings we did, 18 people were diagnosed with having heart abnormalities.” One girl had a pacemaker installed after she was found to have a heart condition, and another patient had been referred to the hospital. Others were put on lifesaving medication.
"18 lives were saved. That's because our programmed was put in place. If it hadn't some of them wouldn't still be here," says Laura.
“If every child in the country had access to screening, the difference would be astronomical. Every school kid in Scotland should have the opportunity to get screened.”
In the UK, 21 people die every month from Sudden Death Syndrome - an umbrella term for the many different types of cardiac arrest, including Long QT, that can kill young people in an instant. Generally, the deaths are caused by the thickening or abnormal anatomy of the heart muscle, or an irregularity in the electrical system of the heart. Warning signs or symptoms such as exercise-related chest pain, breathlessness, dizziness or fainting can be so mild, they are often go ignored.
“There is no symptoms, nothing. You are just gone,” says Laura. “Dead in seconds.
“When my daughter Jodie died, she was accused of taking drugs, which was wrong, but it was all over social media. More people need to know about these heart conditions. Awareness is everything.”
Laura says an increase of knowledge and research is key to saving more lives. “Doctors need to be more informed, they need to know what to look for and what medication people with these conditions can and can’t take. A few years ago there were only two strains of Long QT that were recognised. Now there is 28. It’s evolving every single day.
“That’s why I’ll never stop. I’ll keep fundraising for years until we get the money we need and the results we want.
“This money will save other people. It won’t be able to save my girls but it will save people from the pain I am going through every single day. It means my girls won’t have died in vain. If we just save one life, that saving one family from the heartache and trauma that I go through every day of my life.
“There is a lot of red tape, a lot of things holding me back. But I am a determined person. I’m doing it for my girls.”
Story Credit: https://www.glasgowlive.co.uk/news/glasgow-news/how-unthinkable-tragedy-glasgow-saved-14524184