WHY SIBLINGS ‘COULD DIE AT ANY MOMENT’
BECKY Rosser’s heart first stopped beating when she was four-yearsold.
As other children her age came home from school and went straight back out to play, Becky was having to be resuscitated by her terrified grandmother in a car on the way to the hospital, where she would spend the next several hours unconscious.
It was the moment everyone realised that the same rare condition that had claimed the life of Becky’s mother would also cast a long shadow over both her and her brother Callum’s futures.
The brother and sister were still babies when in June 1998 their 25-year old mum Jayne suffered a massive heart attack, leaving her brain damaged and in need of 24-hour intensive care.
She died two years later leaving her fiancee, and Becky and Callum’s father, Darren utterly bereft.
So devoted was the dad-of-two that for years after Jayne’s death, he kept all of her things exactly as they were before taking his own life.
Becky and Callum were then bought up by their grandparents Jeanette and Richard Rosser in Hengoed with the same heart condition – Long QT syndrome – as their mother Jayne.
Long QT syndrome causes an electrical disturbance in the body which brings about irregular heartbeats, resulting in palpitations, fainting and, in some cases, sudden death.
The reality of the condition means that Becky and Callum go to sleep each night knowing they might not wake up again – a fact that’s shaped their lives beyond recognition.
Becky, 21, said: “I had to grow up really quick because of everything that’s happened to me.
“I had my first pacemaker fitted when I was six, which was when I had my second cardiac arrest.
“There have been five different implants since, including a faulty one which, when I was on holiday in Tenby aged 12, started giving me shocks for no reason while I slept.
“I remember waking up with a jolt and thinking I was being kicked by my brother.”
Callum, a 22-year-old accountancy student, counts himself lucky,
“I’ve been lucky, l’ve not gone through the things Becky has. So seeing her fitting like that really affected me,” he says, sitting with his sister at his home in Barry.
“In a funny way I often feel guilty that she’s had it worse than me and I worry about what it will feel like when it finally becomes my turn. “I try not to think that way, but I suppose I must have daydreamed about it a million times like each night when I lie down in bed on my left side and feel discomfort from the pacemaker hidden there under my skin.
“It’s a similar sensation to sitting down with your car keys in your trouser pocket, it can dig away at you.”
And school life was far from normal for them both. “I wanted to join the football team and try kickboxing but those around me, who were much more aware of my health limitations than I was, held me back. And rightly so.”
For Becky though, that sense of exclusion came at a far heavier price.
“It was hard trying to understand that I could only do so much without endangering myself,” she says. “Sport, fitness - all the stuff that makes you popular in your teenage years – was off limits and I ended up getting bullied alot.
“People would look down on me because they saw me as inferior in some way, which made me depressed and sent me through a real down stage.
“I was always on my own, but, ultimately, I think that also helped toughen me up,” she adds.
“I realised there was no point worrying over something that might happen and to just get on with things.”
“We’re a lot more protective of each other now, “said Callum.
“We’d fight like cat and dog as kids, but I think that was the resentment we both felt at not having a mum and dad slowly working itself out.
“Personally, the only memory I have of them is going swimming in a lake in Brecon, where we had a caravan, and my dad throwing me up into the air.
“I must have been tiny at the time.” But while Callum admits to always having been more outgoing and accepting of his condition, it took falling ill earlier this year to finally prompt Becky into facing up to her situation.
“I decided to cut out all the rubbish I was eating and I stopped drinking and being afraid and started getting fit instead,” she says, adding that she’s now training to become an aircraft mechanic with British Airways.
“I’d been told my whole life what I can and can’t do, but until you push yourself you’ll never truly know how much you’re capable of.
“You see, I don’t know what the life expectancy of a LQTS sufferer is, no one can really say.
“Neither do I know if I’ll ever be able to have kids or not – will the stress of labour be too much, or will I pass the condition onto my children just as our mum did to us?
“All I do know is I won’t let my condition define me any more. If it’s my time to go it’s my time to go.
“I get how certain people might think that’s in some way irresponsible of me, but I just don’t want any regrets.
“To me there’s nothing worse than the thought of looking back and realising I spent so long worrying about dying that I forgot to live.”
I had my first pacemaker fitted when I was six, which was when I had my second cardiac arrest