My son nearly died as he walked home from school

Owen

Schoolboy Owen was just nine when he collapsed on his way home from school. 

As a result the family found he had an inherited heart condition, hypertrophic cardiomyopathy, which caused his heart to stop beating. 

His father David tells the story.

"It was a special day for Owen. He was getting a certificate for a story he had written at a special school assembly.

I managed to get away from work and I turned up at school and surprised him. When he saw me he was so proud and excited. He received his certificate and he couldn’t stop smiling.

He came up and showed me his award and I said: I'll see you in half an hour. I went home and Owen went back to the last class of the day.

But at 3.20 I got a call from my wife saying Owen had collapsed. I went straight to the school office and my wife called again, saying: ‘Hurry up, he’s not breathing’.

Shock

I went in to a state of shock. It was panic mode.

Owen had collapsed and fallen in to the road as he left school. When I got there, I saw that lots of people were holding umbrellas over Owen because it was raining.

A paramedic was performing CPR on him and all I could say was: 

‘No, no, no! Please don’t stop, please don’t stop!’

Because they got to Owen quickly, they managed to keep him going and to get his heart beating again with a defibrillator.

Inherited condition

In hospital they began tests on Owen to work out why it had happened.

They told us he had a condition called hypertrophic cardiomyopathy that had caused his cardiac arrest. 

He also needed an ICD fitted so that if it happens again the device could shock his heart back to a normal rhythm.

We were told that Owen’s condition was likely to be inherited, so it was vital to get other members of the family tested.

They found the faulty gene that had caused Owen to have the condition, and when my wife and I were tested we found he’s inherited the gene from me. I am under the care of a specialist, and am monitored regularly.

The testing has since uncovered that several other members of the family have the same faulty gene.

My uncle has had an ICD fitted and we are now all monitored regularly. 

We know that genetic testing has helped save lives in our family."

Other people with hypertrophic cardiomyopathy

More information

Find out more about hypertrophic cardiomyopathy or about living with the condition.

Our Genetic Information Service offers information if you or a member of your family has been diagnosed with or has died from a suspected inherited heart condition.

Help end the heartache

With your support, the Miles Frost Fund can help us end the heartache caused by hypertrophic cardiomyopathy.

Donate now