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Over 600 youngsters die each year in Britain from rare heart conditions, and Jo Urch's 5 year old son has just been told he has Long QT Syndrome.
The illness could cause sudden death in otherwise fit, young people at anytime.
It stops the brain from getting enough oxygen, and there's more risk of an attack when exercising.
There was a 50/50 chance that Tyler would have the condition, as his mum Jo found out a year and a half ago whilst on holiday that she has it too.
Many people live their normal lives without even having any symptoms or realise they have a heart problem, until it's too late.
Jo's now trying to raise awareness and money for the charity CRY (Cardiac risk in the young) that wants to make screening for heart diseases compulsary from a young age.
She's planning to trek across the Sahara Desert and is organising a concert in the Bay this summer.
To listen to the full interview with Jo Urch CLICK HERE