If
Nuneaton mum-of-two Rachel Wiln hears her children cry it could
potentially kill her.
The 29-year-old suffers from a rare genetic
condition, Long QT syndrome, which means that loud noises could stop her
heart.
But a specially-adapted pacemaker fitted
earlier this year is helping make her life easier.
She found out this month that it had
already saved her life once – by jump-starting her heart after it stopped
when she was awoken in the night by her son Adam screaming. The
device also helps to regulate her heartbeat.
She only found out about the incident at
her regular check-up at St George's Hospital, London.
Rachel is still coming to terms with what
has happened and the consequences of Long QT syndrome, which has already
claimed the life of her sister Lisa Browne.
Lisa, who trained as a nurse in Coventry,
died four years ago when she was awoken by an alarm clock.
Doreen Harley, Rachel's mum, said the last
few years had been very upsetting, particularly following Lisa's sudden
death in 1998.
"Rachel is finding it difficult to
accept everything at the moment. It has been a very difficult year.
She has gone through an awful lot of stress" she said.
"It has been very stressful for us
too. We have lost one daughter and if Rachel had not had the
operation to have the ICD pacemaker fitted we would have lost her
too."
After Lisa's death Doreen and husband Terry
were tested for Long QT with the help of charity CRY – Cardiac Risk in the
Young.
Terry was found to have the little-known
condition.
It took Rachel a while to decide to be
screened and in January this year she agreed to testing. It was
found that she also suffered from Long QT syndrome.
Not only that but Rachel's eldest child,
Jack, aged six, was also found to have the syndrome. Doctors believe
medication could control Jack's disorder. Adam her other son has
been screened but his results aren't back yet.
Mrs Harley said the family wanted to raise
awareness of Long QT and similar conditions and encourage screening.
At the moment CRY believes between four and
eight young people die each week from sudden cardiac death.
"A lot of these deaths could be
prevented. We don't want to alarm anyone – we just want to alert
people to the fact that screening can save lives. If a disorder is
diagnosed it can be managed." said Doreen.
