Researching Long QT syndrome

Twelve-year-old Cure Kids ambassador Daniel McKay is lucky to be alive. He’s one of many young New Zealanders who suffer from the inherited cardiac disease ‘long QT syndrome’, otherwise known as the ’silent killer’.

Dan, who wears a pacemaker, is one of the lucky ones diagnosed before it was too late. Others are not so fortunate and many apparently fit, healthy and active children can die from long QT, suddenly and without warning. What’s more, the victims’ family members may also be at risk. In fact, the disease has become so prevalent that it outstrips childhood leukaemia with at least 80 deaths every year.

Cure Kids, an organisation committed to raising funds for medical research into children’s life-threatening illnesses, is spearheading research into long QT syndrome and other inherited cardiac conditions. The research will be undertaken by leading Auckland paediatric cardiologist Dr Jon Skinner and his team at the Cardiac Inherited Diseases Group, who are passionate about setting up a national screening programme for diseases like long QT. “Cure Kids recognises the importance of a national screening programme and subsequent genetic testing for family members,” says Chief Executive Kaye Parker. “It will mean immediate life-saving treatment for anyone suffering from long QT and other inherited cardiac diseases.

“Diagnosing the problem is expensive,” she says, “and we’re indebted to the Todd Foundation’s Centenary Fund for helping us with this vital project. It’s a contribution that will have far-reaching benefits for many New Zealand families.”

Cure kids: www.curekids.org.nz