The syndrome believed to have led to the death of John Pepper at the age of 39 is very rare.
However, John died of a sudden heart attack and – according to his mum Christine – 12 young people a week in the UK die a sudden death.
SADS UK says each year between 80,000 and 120,000 people suffer a cardiac arrest in a public place in the UK.
It has launched a Big Shock Campaign to ensure schools have defibrillators and training in place to save lives if cardiac arrest occurs.
Christine and her family are raising funds to buy a defibrillator for Weston St Mary Primary School and another for the Young Dons football club at Donington.
Each defibrillator, complete with the necessary training, costs £1,200.
If you would like to support the campaign, either contact the school on 01406 370333, email email@example.com or contact the Young Dons on 07553 132013, email firstname.lastname@example.org
To find out more about SADS UK’s Big Shock Campaign contact 01277 811215 or email email@example.com www.sadsuk.org