My dad died when I was eight.  He was supposed to pick me and mum up in the car but never came.  We discovered later he’d been found dead in his room at Butlins where he worked.  I was a real daddy’s girl and his death broke my heart.

The doctors said he died if ‘sudden death’, but we didn’t know why.  Then mum saw a TV programme about an inherited heart condition that has no symptoms and causes sudden death.  She decided to get me and my younger sister, Laura, now 13 checked out.  When I was ten we discovered Laura and I had Long QT Syndrome.  It’s to do with the electrics in your body, where a signal doesn’t reach your heart and it can miss a beat or stop.  There’s no cure and no symptoms, you just drop dead.

Having Long QT didn’t worry me – I was too young to understand – but I hated how it changed my life.  I had to give up swimming and riding my bike.  I wasn’t allowed to do anything that would speed up my heart or shock me.  I couldn’t do PE, go on fairground rides, watch scary films or have an alarm clock.

Under constant watch

Waking up was the most dangerous time for me, because your heart speeds up, but the shock of an alarm clock could have stopped my heart too.  I couldn’t go anywhere alone in case I collapsed.  I couldn’t go to the shops, mates’ houses or even the loo at school unless someone was with me.  I felt frustrated and helpless having people with me when I felt perfectly fine.

I felt left out because I couldn’t join in with my friends when they went to funfairs or discos.  Most of the time I stayed indoors and did nothing.  Until recently my curfew was 9 pm and I hated that, especially because my friends were allowed to stay out until 11.30 pm.

At 13, my heart stopped.  I was on a funfair ride with my mates even though I shouldn’t have been.  I remember the Waltzer starting, and seeing the strobe lights, and that was it.

The next minute I was waking up any my friends were telling me I’d missed the ride.  I guessed what had happened and knew it was a bonus to wake up again so I wasn’t scared.  I said, ‘Don’t worry, I’m here!’ I stayed at the fair, but my mates wouldn’t let me go on any more rides.  Mum was furious when I told her.  She gave me a real telling-off.  The doctors gave me beta blocker tablets to steady my heart beat, and I had to take them every day.

Over the next year I collapsed four times without warning.  Once I was about to walk downstairs at home and turned to say something to my sister.  The next thing I knew I was at the bottom of the stairs.  I was terrified.  I didn’t know what had happened and my back and head were in agony, because I’d hit them on the way down.

Another time I 'went' at school.  I remember the corridor being crowded and noisy, and the next thing I remember is lying on the floor with a teacher standing over me.  He looked scared, and I could hear my mates crying.  I must have been out for some time because the corridor was empty.  Everyone thought I was dead.

During that difficult year my then boyfriend was always there for me.  I think my condition worried him, but he never showed it.  I could also talk to my three best friends, and Mum and I found out more information about my condition from a charity, Cardiac Risk In The Young (CRY).  That’s where we heard about a defibrillator implant that can monitor the heart inside people like me.  It paces your heart if the beat becomes irregular, and if your heart stops it will administer a shock to start it again.  So, when I was 14, Laura and I went into hospital for the implants.

Brand new start

One Monday in November 2000 we had the operation.  I went in happily, knowing my life would be better.  The doctors implanted the defibrillator under the skin on the left side of my chest.  It’s the size of a thick credit card.  It doesn’t hurt, but when I tried to sit up for the first time I couldn’t believe how heavy the defibrillator was!

On the Friday doctors tested the implants by stopping our hearts.  Laura went first and I had a panic attack.  I think I was worried the implant wouldn’t work.  I became hot, shaky and red.  I couldn’t walk, it was awful.  Luckily both our implants worked and we went home that day.

Since then I’ve been fine.  The implant hasn’t had to shock my heart.  Apparently it’s like being kicked by a horse.  It sounds scary, but you don’t know till it happens. 

Laura and I are taking a counselling course through CRY to help others like us.  Eight young people die from ‘sudden death’ every week, and most of them probably didn’t know they had it.  Doctors think it’s a rare condition, but that’s because most people who suffer from it don’t know they have it.

It’s important people know about this, so mum, Laura, and I are raising money for CRY.  We’ve got a bright pink VW van, and we’re getting celebs to autograph heart-shaped stickers so we can auction it covered in them.  For mum’s honeymoon in September, she’s driving the van from John O’Groats to Land’s End and back to raise funds.

It won't stop me

Even though I can swim and learn to drive, which I wasn’t allowed to do before, I still have to be careful.  I have to use my mobile in my right hand in case it affects the implant, but I’m left-handed and sometime forget.  I have to sit in the front of my boyfriend’s car because the speaker in the boot might turn my implant off.  I can’t go and see his band or go clubbing, but I probably will!

I’m not supposed to see scary films, but I saw The Ring recently.  It scared the life out of me, but I’m still here.  I’ve done most things the doctors told me not to.  They said I shouldn’t have sex, but I have and it didn’t do me any harm.