Emma and her sons Arie (15) and Louis (9), have Long QT Syndrome (LQTS). Her two other children Demi (11) and Ollie-Blue (4) haven’t inherited the condition. Their father and Emma’s ex-partner is David.
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,” said Emma. “His father, David, was there and witnessed the whole terrifying episode. Arie recovered consciousness but it was terrifying and we knew it needed investigating.”
Arie, who is now 15, was sent to St Thomas’s Hospital in London for tests where they discovered he had an inherited genetic condition called Long QT Syndrome (LQTS) which can cause palpitations, fainting and even sudden death.
Episodes can be caused by stimuli including physical exercise, being startled or, in Arie’s case, hearing a loud noise. Emma said: “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. Even now, someone shouting, saying ‘boo’, or even the TV being on too loud could stop his heart.”
Genetic testing revealed that Arie, his younger brother Louis (9), Emma and her dad were all affected by a type of LQTS called LQT-1, but not their father David [Hunt] (33), sister Demi (11) and younger brother Ollie-Blue (4). 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.
Soon after diagnosis, Emma contacted CRY (Cardiac Risk in the Young), who have received a 2011 Jeans for Genes grant to expand the myheart network for children and young people. “They often find it difficult to talk to adults about what they’ve been through. It’s great for them to be able to speak to other youngsters, so more of these groups would really help.”
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.”