Arie and Louis's story long QT syndrome (LQTS) - Jeans for Genes

Arie and Louis's story

Emma and her sons Arie (15) and Louis (9) have long QT syndrome (LQTS). An inherited genetic condition, LQTS can cause palpitations, fainting and even sudden death, so those affected need to avoid loud noises and rough environments.

When Arie went to play in a weekend football match in 2006, his family had no idea that an ordinary game would turn into an extraordinary life-changing event. ‘Arie, who was 10 at the time, was playing football when the whistle blew and he collapsed on the pitch,’ says Emma. ‘His father, David, was there and witnessed the whole terrifying episode. Arie regained consciousness but it was terrifying and we knew it needed investigating.’

Arie was sent to St Thomas’s Hospital in London for tests where they discovered he had LQTS. Thankfully, Emma’s two other children, Demi and Ollie-Blue, haven’t inherited the condition.

LQTS episodes can be caused by stimuli, such as physical exercise, being startled or – in Arie’s case – hearing a loud noise. ‘They think that his heart stopped during football because of the sound of the whistle, and the force of hitting the floor started it up again,’ said Emma. ‘Even now, someone shouting “boo”, or even the TV being on too loud could stop his heart.’

The affected family members, from Rochester in Kent, now take medication, plus Arie had a defibrillator implanted in 2010 to jolt his heart into working if it stops again.

Although Emma wants Arie and Louis to have ‘as normal a life as possible’, they have also had to introduce lifestyle changes to adapt to the LQTS diagnosis. ‘We no longer play or watch football but we go fishing, play pool and play Wii games together,’ says Emma. ‘In a funny kind of way, LQTS has brought us closer.’