A mum and dad who have buried three of their children now watch helplessly in the knowledge the same fate awaits their surviving daughter.
Little Jade Lake carries a genetic timebomb – a disease that has no known cure and will one day kill her.
Each year the eight-year-old, who has a mental age of just two, hangs three angels on her family Christmas tree.
She is oblivious to the fact the knitted characters are heartbreaking tributes representing each of her lost siblings.
Nor does she realise she suffers from the same ultra-rare genetic condition that will eventually kill her too.
The "ticking time bomb", Leigh’s syndrome, means every day poses a risk and this Christmas could have been her last.
"We take it day by day," said dad Craig. "She might go to bed one night and not wake up."
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, GrimsbyLive reports.
Angel died aged three in 2011, AJ died aged just three months in 2014 and just a year later Jasmine died aged nine.
Jade is the only surviving child. Her time too is sadly running out but her parents have no idea when the end might come.
Leigh’s syndrome slowly destroys the centre of the brain. It is 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."
Leigh’s has left Jade with a mental age of two and severe epilepsy. She has the memory of a "gold fish" and is constantly tired.
She is the Lakes’ first child to talk and walk – rare abilities in Leigh’s sufferers that have left her parents and doctors dumfounded.
At the age of eight, she is considered "long lived". She currently has a cold, a trivial every day illness but one that nonetheless has the power to kill her.
"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."
The couple are never prepared for tragedy when it strikes, but the cycle of grief means they have grown to recognise danger signs.
"We just can’t predict the future," said Craig. "All we know is that she is becoming more and more tired.
"Her fits have increased over the past six months. We know from experience that is a bad sign."
The couple are alert to everyday killers, like the common cold, that can "kickstart" a deadly chain of events.
Their 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.
"She was fitting like a trooper," said Craig. "Her heart would stop constantly. So we would have to resuscitate her and bring her back so many times.
"She was really poorly. Then she just decided enough was enough."
The tragic experience means the Lakes are constantly alert to Jade’s health. The most recent scare came on her birthday in September when her temperature soared.
Thankfully she recovered. But the incident served as a bitter reminder of the risks posed on a daily basis.
The couple received the bombshell Leigh’s diagnosis several months after their first two children had started showing signs.
Jasmine’s walking struggles and "bum shuffling" were initially classed as "laziness" by doctors and then falsely diagnosed as Rett’s syndrome.
Adele fell pregnant with AJ and Jade by accident a few years later despite using contraception.
"None of the children have been planned at all," said Craig. "But we don’t believe in abortion.
"People may think we’re right or wrong but to us life is life no matter what."
The genetic condition and its consequences have led the family to receive a barrage of abuse, online and in the street.
"We have been called all sorts," said Craig. "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."
He added: "We have no plans for more children. We have had enough. We will definitely make sure there’s no more accidents."
A day never goes by without Craig and Adele thinking about their immense loss.
"We always bring the children back," said Craig, opening the door and switching on the lights. "We keep them all in here."
Between the living room and the kitchen, three boxes of ashes are piled up in a wooden cabinet each with their favourite teddy beside.
Craig comes here every night to say "goodnight" to his children and remember their short lives.
"For us, they are still ours," he said. "They are still here. They are still part of us. They should be with their family no matter what – in life or in death."
But this cycle of loss has allowed Craig and Adele no proper chance to grieve.
"It’s very difficult," said Craig. "People ask ‘do you grieve?’. The problem is we have never really had time to do it.
"Because we have lost one then we come back. It’s an ongoing cycle. We do grieve, but in our own way."
"It will hit us like a tonne of bricks one day," Adele said. "I know it will."
On top of the cumulative trauma, Jade’s exhausting care takes a daily toll.
Nights are particularly disruptive. Marred by Jade’s screams, fits and hallucinations throughout, Craig and Adele have not had a good night’s sleep in 12 years.
The daytime is not much better. Jade can’t spit or blow her nose and frequently chokes on food.
She needs a wheelchair to travel long distances and suffers severe epileptic fits Jade calls "exercises".
But for now, all the Lakes can do is carry on in the knowledge that every day may be Jade’s last.
They paid a special thanks to Diana, Princess of Wales Hospital, their "second family" at St Andrew’s Hospice and When You Wish Upon A Star.
This Christmas there was a mound of presents under the tree for Jade and an abundance of precious memories created.
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