The family of a Doune teenager who tragically died of a rare heart condition have met with Stirling’s MSP.
Evelyn Tweed MSP met with Morag and Gilbert Ferrier to discuss the debate on cardiomyopathy and hopes for the future.
Earlier this year, Ms Tweed led a debate in the Scottish Parliament on cardiomyopathy, to raise awareness of the condition and to celebrate the fundraising efforts of the Ferriers.
Morag and Gilbert lost their son Callum to cardiomyopathy in 2008.
Callum, described as fit and “sports-mad”, was aged just 16 when dad Gilbert found him dead in bed.
The popular McLaren High School pupil was later found to have died of hypertrophic cardiomyopathy, a disease of the heart muscle.
Since then, his family – including his three brothers – have raised over £30,000 for Cardiomyopathy UK through treks, ceilidhs, sky dives, and other events.
As well as regular charity ceilidhs, Callum’s brothers Sean, Darren and Neil have raised thousands of pounds through a host of events including 10k runs, half and whole marathons, and even a 64-mile charity trek in the Sahara Desert in 2012, as well as challenges in Machu Picchu and the Great Wall of China.
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Cardiomyopathy is a group of conditions that affect the shape of the heart and make it difficult for the heart to pump blood around the body.
Ms Tweed met with Callum’s parents at the newly reopened Woodside Hotel in Doune to present them with the motion and to reflect on the debate and their hopes for what can be achieved next.
They discussed the issues around screening, including parts of the world where all young people are screened before they take part in sport.
MsTweed said: “I was grateful for the opportunity to meet with the Ferrier family to personally congratulate them on their successful fundraising, and to discuss the future.
“We talked extensively about screenings, which are vital as there are no signs or symptoms in 80 per cent of cases of cardiomyopathy.
“Screening in the UK is limited, being offered to those with symptoms on the NHS but those without symptoms rely on charities working in this area.
“I am committed to continuing to raise this issue in the parliament, and in my role on the Health, Social Care and Sport Committee, and to work towards more widespread screening.
“I am grateful, and I know the Ferrier family are too, for the interest and engagement on this debate, and I look forward to a future where cardiomyopathy is diagnosed and treated for as many young people as possible.”
Morag said: “It was a great pleasure to meet Evelyn Tweed MSP. We met after her recent debate in the Scottish Parliament on Cardiomyopathy.
“Evelyn has been very supportive of this cause, which is dear to us.
“To move the cause forward and possibly have some sort of support in Scotland for the benefit of sufferers would be our dream. Evelyn has encouraged us with her support.
“Our next fundraising event is Callum’s Ceilidh. Past ceilidhs have been successful and enjoyable.”
Although cardiomyopathy is frequently undetected, it is possible to diagnose it. Doctors use scans and tests such as electrocardiograms, echocardiograms and magnetic resonance imaging, and once diagnosed the condition can be managed through lifestyle, medication or surgery.
Diagnosis for family members is also available on the NHS due to the genetic nature of the condition.
Symptoms can go unnoticed or remain mild, or they can get worse over time. They include breathlessness, chest pain and feeling faint or light-headed; the abdomen, legs and feet may become swollen; and the rhythm of the heart may be abnormal.
Callum’s Ceilidh will be held on March 18 at 7.30pm in Victoria Hall, Dunblane. Tickets are available from Morag on 07909564963 and Neil on 077868672225.
Anyone interested in volunteering for Cardiomyopathy UK in Scotland can find out more at https://www.cardiomyopathy.org/westscotland
