It was in April 2003 that our lives changed due to Long QT Syndrome.

James who was 10 then, had been really ill with a bowel infection, and because of the constant vomiting had become seriously dehydrated. We'd had the doctor out, and he gave James some medicine to stop the vomiting, and some re-hydration sachets. It was his fourth day of being ill, and after having the medicine from the doctor; James was now able to keep things down. When ever my kids are poorly I always have them sleep in my bed, just in case…had my son not slept in my bed that night, then he would be dead now. I awoke at 4am to hear James making strange, little gasping noises. Thinking he was having a nightmare I just watched over him for a few moments and then mothers instinct kicked in and I knew something was wrong. I tried calling his name, gently at first, still wondering if he was having some sort of nightmare, and when he didn't respond, I started to call louder, and with no response, I started to shake him, shouting his name at the same time. All of a sudden he gave a last gasp, which sounded to me as though it was his lungs emptying, and his face gradually was loosing colour and turning grey. His lips went the deepest blue I have ever seen and then his bladder 'popped' and emptied. I just knew he was gone.

My husband was awake by now, and I shouted for him to "do something", whilst I rang the ambulance. I still couldn't accept the words in my head, that my son was dead. Whilst I rang the ambulance, my husband checked for a pulse on his neck and wrists, checked to feel any breath coming from his mouth and looked to see if his chest was moving at all. There were absolutely no signs. His arms were freezing cold, apparently, from his fingers up to his elbows. Everything within my precious boy was gone. John, my husband, started to press on my son's heart…. then suddenly after a few, hard presses, he gave an almighty deep gasp, and the colour slowly started to return to his face. He was so disorientated, trying to push back out of my arms, to lie down. He was crying that he couldn't breathe and was unaware of what had happened. It was almost 4.30am by now.

We were admitted to Sunderland Royal Hospital, where they told me he'd had some sort of seizure, and even though for 2 days, the ECG continually showed an abnormality, we were to be discharged.

Luckily, a specialist from the Freeman Heart Hospital happened to be there, and once she'd seen James records, she referred us immediately to the Freeman Hospital. Once there he was given many ECG's, and a heart scan, and then they broke the news to us that my son has a condition called Long QT Syndrome. My world fell to pieces. James would need medication for the rest of his life - Beta-blockers, and certain things were to be avoided…physical exertion, shocks, stress or anything that causes him physical or emotional pressure. In extreme cases, where the person would faint/black out/cardiac arrest, then defibrillators/pacemakers are fitted. But because James had only had one episode of his heart stopping, then the specialists think Beta-blockers would be the best course of action.

The following two weeks in hospital were a nightmare. I slept there with James, and because we have another son and two dogs, my husband had to commute the 30-mile journey daily.

After arriving back home James was too scared to sleep alone, in case this happened again…I was only too happy to have him sleep with me. It took many weeks before he would go into his own bed again.

After having all the family tested with ECG's, so far LQT has only shown in my eldest son…it would appear to be a faulty gene mutation.

To rule out LQT in my youngest son and myself, we are awaiting genetic test results. My ex-husband, who is the biological father of my 2 boys, doesn't think it necessary to be tested.

Whilst this was all a huge shock and feels like we have been on an emotional roller coaster, I thank our stars that I still have my son with me today.