ON May 5 2015 as one-year-old Josh and two-year-old Faith lay sleeping in their beds, their mum Janice Maxwell was woken by the "heavy snoring" of her partner Graeme Kilpatrick.
The family had just returned home from a weekend with their extended family at their new caravan in Cloughey, Co Down, and had gone to bed as normal that night, but the events that then quickly unfolded turned their world upside down and left two beautiful little children without a father.
"I was digging Graeme in the ribs and saying "Would you stop snoring", but he wouldn't stop. I felt there wasn't something right and I put the light on. I though he was maybe dreaming, so I started shaking him but he wouldn't waken. I phoned the ambulance and the operator talked me through CPR," recalls 35-year-old Janice, who tried desperately to revive her partner.
"It's a horrific memory. I did what she said and was screaming "Please don't leave us". Looking back on it, it was like a scene from a movie. We only live half a mile from Dundonald Hospital and the ambulance came about 10 minutes later."
Sadly Graeme, who was just 32, had already lost his fight for life; the one thing Janice was grateful for was that the children slept through it all.
"We came back from the hospital at 7am and the kids were just coming down the stairs as normal after waking up," she recalls.
Although Graeme had felt "a bit flu-ish" he had been eating and drinking normally and in good spirits that day and his sudden death came as an extreme shock to everyone.
"We had a really lovely weekend and were flying a kite that day, then overnight he was gone," Janice says.
The family later discovered that Graeme, who played football and ice hockey, died from an inherited condition called Brugada syndrome, a rare heart rhythm disturbance, classed under Sudden Arrhythmic Death Syndrome (SADS).
CRY (Cardiac Risk in the Young), is a charity involved in raising awareness of the developing research into these conditions which are taking many of our young people, particularly in the sports field.
According to research from the charity, every week in the UK 12 apparently fit and healthy people aged 35 and under die suddenly from a previously undiagnosed heart condition.
Graeme's death obviously had a profound impact upon Janice.
"Not having him any more you losing your hopes and dreams of family life, but watching someone die in front of you takes away that care-free attitude to life you would have had before," she says.
Brugada syndrome is a genetic condition and Graeme and Janice's children Josh and Faith will be monitored throughout their childhood and into early adulthood in case they develop it.
A mother's instinct is to protect her children and Janice admits she "almost didn't sleep for an entire year", as she would sit by their bedside watching them sleep, with any little cough or snore waking her from her sleep.
"I was constantly thinking, 'Are they still alive?' Thankfully that's calmed down a lot now," says Janice, who found that yoga and running helped her to relax and cope with life after Graeme.
This year Janice has set herself the challenge of running 12 10k races as well as the Belfast marathon and half marathon in order to raise money for CRY.
"Running keeps me focused. We really miss Graeme and there's not a day goes past when he's not mentioned in the house, but the grief does become bearable. Life becomes a new normal," she says. "The research into these conditions is developing so much, but they need so much more funding. When I knew my kids could be directly affected I wanted to raise some money to help."
Janice would love genetic testing to identify the cause and treatment for these arrhythmic syndromes and for all young people to receive cardiac testing.
To date, CRY has provided electrocardiogram and echocardiogram screening to 12,879 young people between the ages of 14 and 35 in Northern Ireland, and have free screenings at five venues in the north planned for later this year.
As well as her own family and friends, Janice is also grateful for the invaluable peer support she received through the online social forum Widowed and Young (widowedandyoung.org.uk), which connect people aged 50 or under whose partners have died.
"The husband of the girl I'm firm friends with passed away three weeks before Graeme in exactly the same way. To have that connection with someone who has been through the same as you have been is priceless. We have been through the very dark times together, right through to now when we're starting to grow in confidence and do things for ourselves."
:: To support Janice in her fundraising efforts for Fundraising for Cardiac Risk in the Young visit www.justgiving.com/fundraising/Janice-Maxwell. For further information on CRY's specialist bereavement support and details of forthcoming screening service contact 0173 7363 222 or visit www.c-r-y.org.uk.
