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Rare illness that killed teenager puts her whole family at risk
Mark Blunden20 May 2009
The mother of a teenager killed by a rare genetic condition faces a race against time to warn her estranged relatives that their lives are at risk.
Rebekah Borg, 18, from Camden Town, died on 12 February from a disorder called sudden arrhythmic death syndrome — which it is thought to have killed her grandmother at the age of 24.
The condition kills about 500 young people every year who are apparently healthy and unaware they are at risk. Miss Borg, a trainee beauty therapist, showed some symptoms of the disease, such as dizziness and stomach aches, but had no idea of its risk. Her mother, Toni Scoullar, 40, found her dead in bed after she failed to answer two phone calls during the day.
Mrs Scoullar learned on Friday that her son Bradley, 22, is a sufferer and may need a pacemaker and that his son Theo, 11 months, is also at risk. She is tracking down her estranged sister, who has a daughter, to warn her.
She said: “It's so devastating to lose a beautiful bright girl and then to realise in our grief that we're all at risk from this condition. It's turned our lives upside down and made us feel so vulnerable and fragile. Our perception of life has completely changed.”
An inquest at St Pancras coroner's court last week confirmed Miss Borg died from a type of SADS called long QT syndrome, which creates an abnormality of the heart's electrical signals that can cause irregularities in its beat.
Dr Mary Sheppard, a heart expert at Royal Brompton Hospital, said it was likely granddaughter and grandmother died from the same condition. She said: “Tragically the first indication they had as a family was a death. Beckie had almost no symptoms and it couldn't have been treated.”
Mrs Scoullar was four when her mother died in 1974. She said: “My grandmother got up one morning and heard my mother gasp for breath and faint. She died of a heart attack on her way to hospital.”
The condition is treatable by having defibrillators on hand to restart the heart or with drugs such as beta blockers which control arrhythmia's. Last month Mrs Scoullar began a campaign to raise awareness of SADS.
Her daughter's college, the London College of Beauty Therapy in Great Marlborough Street, is holding a fundraising event for SADS UK today from 6pm to 9pm.
