June 19 2013 Latest news:
By Matt Hunter
Thursday, March 7, 2013
THE mother of a 15-year-old schoolgirl who died from a rare heart condition is urging the Government to reverse its health screening policy.
Stowmarket High School student Lily Webster collapsed during a trampolining class in January 2012.
A coroner ruled she died from the rare heart condition called Sudden Adult Death Syndrome.
Her family wants young people to be entitled to heart screening and are backing an online petition calling on the Government to rethink its position. Currently the advice given to GPs is not to offer screening.
Lily’s mother, Melanie, said: “It would be good to have screening incorporated in young people’s health. That’s what the charity CRY recommends as the best way forward for everyone to be entitled to it.
“There may not be enough research into Sudden Adult Death Syndrome because there’s not enough screening. That’s the problem – unless we do start a program of screening we will not know the benefits of it.
“It’s great to raise money but actually real change would be for the Government to change its policy – not just for this generation of young people but those to follow.”
Mrs Webster said since footballer Fabrice Muamba had recovered after suffering a heart attack during a Premiership game, the level of interest in Sudden Adult Death Syndrome had fallen away again.
Last year Cardiac Risk in the Young (CRY) screened 12,000 healthy young people between the ages of 14-35. About 40 of those were diagnosed with a potentially life-threatening cardiac condition. A further 120 were diagnosed with a cardiac condition which could cause major complications later in life.
The petition, which will end on March 28, is on www.epetitions.direct.gov.uk/petitions/31819.
The family have so far raised £12,000 for the Lily Webster Memorial Fund which supports CRY. From that, £5,000 has gone to the charity’s funding and research. The family also want to spend thousands of pounds on screening hundreds of children in Stowmarket and Stowupland.
Today, a football match between teachers from Stowmarket and Stowupland will raise money for the fund. The EADT has made a donation to the appeal. Tickets are £2 and the game will be at Stowmarket Football Club. Kick-off 7.30pm.