Teh One Who Knocks
12-28-2018, 12:10 PM
Joe Roberts for Metro.co.uk
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Adele Lake with daughter Jade, 8, who has Leigh’s syndrome (Picture: GrimsbyLive)
The heartbroken parents of an eight-year-old girl are watching her die from the same genetic disease that killed their three other children.
Jade Lake suffers from ultra-rare Leigh’s syndrome, which has left her with the mental age of a two-year-old and severe epilepsy.
The inherited condition killed her three siblings whose bodies eventually shut down from severe brain damage.
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Adele and Craig Lake with their daughters Jasmin and Jade. Jasmine died aged nine in 2015
Angel died aged three in 2011, AJ died aged just three months in 2014 and just a year later Jasmine died aged nine.
The parents have faced a barrage of abuse, online and in the street, over the genetic condition and its consequences.
‘We have been called all sorts,’ dad Craig admitted. ‘I have been told to get sterilised. Our children have been abused in the street.
‘That’s just life. That’s their opinion. They don’t walk in our footsteps and see how we feel.’
Craig says they take Jade’s condition ‘day by day’, adding: ‘She might go to bed one night and not wake up.’
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Angel died in May 2011 at the age of three (Picture: GrimsbyLive)
The 46-year-old has already lifted the coffin of three children and lives with the knowledge the dreadful ritual will be repeated one last time.
‘We don’t know how long is left’
Leigh’s syndrome slowly destroys the centre of the brain. It’s unpredictable and there is no known cure or medication to slow it down.
‘I would love to say she will be here in another five years,’ said mum Adele, 33, who carries the deadly gene. ‘But sadly we can’t guarantee that.’
She is their first child to manage talking and walking. They are rare abilities for children with Leigh’s and it has dumbfounded doctors.
At the age of eight, she is considered ‘long lived’.
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The couple lost baby AJ in April 2014 aged just three months (Picture: GrimsbyLive)
‘It’s all about making memories because life is so short,’ said Craig. ‘We don’t know what’s coming tomorrow. We just take each day as it comes because we don’t know how long it’s going to be.’
Crag said Jade’s fits have increased over the past six months, which they know from experience is a ‘bad sign’.
The couple are alert to every day killers, like a common cold, that can ‘kickstart’ a deadly chain of events.
The first child they lost, Angel, died in her dad’s arms after falling ill just two days earlier. Their son AJ died within 12 hours of developing a high temperature.
Jasmine, who lived until nine and a half, however, suffered a slow 38-day death.
Adele and Craig said none of their children were planned, and they ‘don’t believe in abortion’.
‘People may think we’re right or wrong but to us life is life no matter what,’ Craig said.
He added: ‘We have no plans for more children. We have had enough. We will definitely make sure there’s no more accidents.’
http://imagizer.imageshack.com/img923/6707/OxtxTo.jpg
Adele Lake with daughter Jade, 8, who has Leigh’s syndrome (Picture: GrimsbyLive)
The heartbroken parents of an eight-year-old girl are watching her die from the same genetic disease that killed their three other children.
Jade Lake suffers from ultra-rare Leigh’s syndrome, which has left her with the mental age of a two-year-old and severe epilepsy.
The inherited condition killed her three siblings whose bodies eventually shut down from severe brain damage.
http://imagizer.imageshack.com/img923/9683/uev8fu.jpg
Adele and Craig Lake with their daughters Jasmin and Jade. Jasmine died aged nine in 2015
Angel died aged three in 2011, AJ died aged just three months in 2014 and just a year later Jasmine died aged nine.
The parents have faced a barrage of abuse, online and in the street, over the genetic condition and its consequences.
‘We have been called all sorts,’ dad Craig admitted. ‘I have been told to get sterilised. Our children have been abused in the street.
‘That’s just life. That’s their opinion. They don’t walk in our footsteps and see how we feel.’
Craig says they take Jade’s condition ‘day by day’, adding: ‘She might go to bed one night and not wake up.’
http://imagizer.imageshack.com/img922/5379/cprLOV.jpg
Angel died in May 2011 at the age of three (Picture: GrimsbyLive)
The 46-year-old has already lifted the coffin of three children and lives with the knowledge the dreadful ritual will be repeated one last time.
‘We don’t know how long is left’
Leigh’s syndrome slowly destroys the centre of the brain. It’s unpredictable and there is no known cure or medication to slow it down.
‘I would love to say she will be here in another five years,’ said mum Adele, 33, who carries the deadly gene. ‘But sadly we can’t guarantee that.’
She is their first child to manage talking and walking. They are rare abilities for children with Leigh’s and it has dumbfounded doctors.
At the age of eight, she is considered ‘long lived’.
http://imagizer.imageshack.com/img921/329/d2YC56.jpg
The couple lost baby AJ in April 2014 aged just three months (Picture: GrimsbyLive)
‘It’s all about making memories because life is so short,’ said Craig. ‘We don’t know what’s coming tomorrow. We just take each day as it comes because we don’t know how long it’s going to be.’
Crag said Jade’s fits have increased over the past six months, which they know from experience is a ‘bad sign’.
The couple are alert to every day killers, like a common cold, that can ‘kickstart’ a deadly chain of events.
The first child they lost, Angel, died in her dad’s arms after falling ill just two days earlier. Their son AJ died within 12 hours of developing a high temperature.
Jasmine, who lived until nine and a half, however, suffered a slow 38-day death.
Adele and Craig said none of their children were planned, and they ‘don’t believe in abortion’.
‘People may think we’re right or wrong but to us life is life no matter what,’ Craig said.
He added: ‘We have no plans for more children. We have had enough. We will definitely make sure there’s no more accidents.’