Galactus
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Nov 7 2008 by Robin Turner, Western Mail
ALARM clocks and scary films are banned for two Welsh sisters who have both been diagnosed with a rare heart condition.
Sudden shocks could prove fatal for Evie and Chloe Church, aged nine and 11, of Gowerton, Swansea.
They have Long QT Syndrome, a heart abnormality which affects around one in 7,000 people.
The condition, which is genetic, means the girls parents, Simon and Samantha, have to make sure their daughters lives are as controlled as possible.
And though the use of beta blockers brings relative normality to their lives, when they stay at friends, the Churches have to know that the friends parents have knowledge of medical resuscitation techniques.
The two girls also have to be woken up carefully, with alarm clocks ruled out.
In other cases of Long QT syndrome, alarm clocks are thought to have been a cause of death.
In school, the girls have to be told when fire alarms are to be tested.
Samantha and Simon Church would now like to meet other parents of children suffering the same condition.
Mrs Church, 41, said: Id really like our family to meet other people in the same position to find out how they are coping. I think shared experiences and empathy could ease our worries.
She added: Sometimes it just feels like a timebomb waiting to go off. My mother-in-law had the condition and had to have a defibrillator fitted.
Long QT Syndrome cases were first discovered in the 1950s and 60s when the heart could be electrically monitored.
The QT interval is the time it takes for depolarisation (excitation) and repolarisation (recovery) of the ventricles of the heart.
In long QT syndrome, the duration of repolarisation (or recharging of the electrical system after each heart beat) is longer than normal. This may result in a very fast, abnormal heart rhythm (arrhythmia).
When this rhythm occurs, no blood is pumped out from the heart, and the brain quickly becomes deprived of oxygen, causing sudden loss of consciousness and in some cases sudden death.
Several different genetic problems may cause the condition and symptoms typically begin in pre-teen to teenage years, but may occur in newborn children and can appear as late as middle age.
Characteristically, the sufferer suddenly faints or passes out during exercise or when experiencing intense emotions, such as fear, but it can also occur during sleep or arousal from sleep.
There is usually no warning, or sensation of feeling faint or dizzy beforehand. In one in three cases where death results, the person appears quite fit and healthy.
In the Bay of Plenty area of New Zealand, a couple are currently grieving the loss of their third child to Long QT Syndrome.
Courtney Coppell, 18, collapsed and died during a party early last month.
Parents Bruce and Nancy Coppell buried her on October 19 alongside her brother Joshua, 16, and sister Rebecca, 13, who also died from the cardiac disorder.
The couple have two other children, sisters Ashley, 25, and Monique, 22.
The Coppells learnt about Long QT syndrome after the death of Rebecca, who collapsed playing touch rugby. Joshua collapsed while riding his bike in June of this year and died a short time later.
ALARM clocks and scary films are banned for two Welsh sisters who have both been diagnosed with a rare heart condition.
Sudden shocks could prove fatal for Evie and Chloe Church, aged nine and 11, of Gowerton, Swansea.
They have Long QT Syndrome, a heart abnormality which affects around one in 7,000 people.
The condition, which is genetic, means the girls parents, Simon and Samantha, have to make sure their daughters lives are as controlled as possible.
And though the use of beta blockers brings relative normality to their lives, when they stay at friends, the Churches have to know that the friends parents have knowledge of medical resuscitation techniques.
The two girls also have to be woken up carefully, with alarm clocks ruled out.
In other cases of Long QT syndrome, alarm clocks are thought to have been a cause of death.
In school, the girls have to be told when fire alarms are to be tested.
Samantha and Simon Church would now like to meet other parents of children suffering the same condition.
Mrs Church, 41, said: Id really like our family to meet other people in the same position to find out how they are coping. I think shared experiences and empathy could ease our worries.
She added: Sometimes it just feels like a timebomb waiting to go off. My mother-in-law had the condition and had to have a defibrillator fitted.
Long QT Syndrome cases were first discovered in the 1950s and 60s when the heart could be electrically monitored.
The QT interval is the time it takes for depolarisation (excitation) and repolarisation (recovery) of the ventricles of the heart.
In long QT syndrome, the duration of repolarisation (or recharging of the electrical system after each heart beat) is longer than normal. This may result in a very fast, abnormal heart rhythm (arrhythmia).
When this rhythm occurs, no blood is pumped out from the heart, and the brain quickly becomes deprived of oxygen, causing sudden loss of consciousness and in some cases sudden death.
Several different genetic problems may cause the condition and symptoms typically begin in pre-teen to teenage years, but may occur in newborn children and can appear as late as middle age.
Characteristically, the sufferer suddenly faints or passes out during exercise or when experiencing intense emotions, such as fear, but it can also occur during sleep or arousal from sleep.
There is usually no warning, or sensation of feeling faint or dizzy beforehand. In one in three cases where death results, the person appears quite fit and healthy.
In the Bay of Plenty area of New Zealand, a couple are currently grieving the loss of their third child to Long QT Syndrome.
Courtney Coppell, 18, collapsed and died during a party early last month.
Parents Bruce and Nancy Coppell buried her on October 19 alongside her brother Joshua, 16, and sister Rebecca, 13, who also died from the cardiac disorder.
The couple have two other children, sisters Ashley, 25, and Monique, 22.
The Coppells learnt about Long QT syndrome after the death of Rebecca, who collapsed playing touch rugby. Joshua collapsed while riding his bike in June of this year and died a short time later.
