The parents of a tragic teenager who died from a rare heart defect have won support from Parliament in their fight to make a change in the law to prevent any more ‘needless’ deaths.
John and Dian Ber, of Brier Avenue, Hoarden, have been campaigning since their 17-year-old daughter Kasia died after suffering a heart arrhythmia, after a rare hereditary condition called Long QT went undetected for years.
Now with the help of charity Cardiac Risk in the Young (Cry) the couple are lobbying Parliament to make a change in the law to see all youngsters having regular heart checks in schools in a bid to stop other parents suffering the same devastating loss.
Kasia’s dad John, 46, says they have already won the support of 108 members of the Parliamentary Lobby, taking them a step closer to changing the law.
He said: “We are lobbying the Government so they make it law for young adolescents to be tested in schools.
“It’s very difficult for us but we think something good has to come out of Kasia’s death.
“There is not enough awareness of this condition despite the fact that eight young people die of it every week and the Government are just turning a blind eye.”
The condition is genetic and killed Kasia’s aunt and grandfather, and her mother had to have a special defibrillator fitted in her heart after she was diagnosed.
But tragically for Kasia, who was studying A-levels and had won a place on the criminology degree course at Sunderland University just before she died, her condition was never diagnosed.
An inquest into her death suggested she may have died after being startled by her mobile phone ringing.
John, who works at Unipress in Washington, added: “We get our MOT done on our cars every year but unless you’re 65 years old you don’t get your heart checked and it’s vital that we do.”
