Judge’s sympathy for parents battling to stop medics turning off their tot’s life support as it battles rare disease
Connie Yates and Chris Gard have pleaded for help, saying they were running out of time with their baby
THE parents of a baby with a life-threatening condition are fighting doctors to let their son live in what a judge has described as one of the saddest cases to come to court.
Baby Charlie Gard suffers from the rare mitochondrial depletion syndrome with his parents Connie Yates and Chris Gard fighting to be able to take the seven-month-old to the US for treatment they hope will save the tot's life.
The couple are fighting specialists at the Great Ormond Street Hospital in London who think the little boy should be allowed to die with dignity and have his ventilator turned off.
The case is now set down to be heard in April, with Mr Justice Francis saying: "This is one of the saddest types of cases that can come before these courts."
He added that Ms Yates and Mr Gard were "utterly devoted to Charlie and have worked hard to become expert parents in this disease."
Mr Justice Francis told the Family Division of the High Court: "The position is that, so far as the applicant [GOSH] is concerned, it would not be in Charlie's best interests for further treatment to be continued.
He said that GOSH's application was for Charlie's artificial ventilator to be withdrawn and for those treating him to "provide him with palliative care only", saying: "We don't know whether, and if so to what extent, Charlie suffers pain, although he is treated with paracetamol when various procedures are carried out."
The court heard that a second hospital in Spain had also stated that Charlie could not be effectively treated.
But in a heartfelt plea, mum Connie put pen to paper, writing to doctors: "I can't put into words how horrible it is to see court papers with our baby's name on them.
"Our son is being summoned to death."
She said she was worried that the couple's rights would be stripped away, adding: "We love our children with every ounce of our being and we want what's best for him.
"We have his best interests in mind... give him medications and make him better - isn't that what any parent would do? Find me one that wouldn't.
"He has an extremely rare disease, there are only 15 reported cases worldwide. We'd never heard of mitochonrdrial disease before, we actually high 5ed because we naively thought it's good that we know what's wrong - let's get him meds and make him better."
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The couple are now raising money through a , saying: "We just CAN'T let our baby die when there is something that might help him.
"We won't give up on him because he has a rare disease."
In the plea, the parents wrote: "He deserves a chance and he deserves a life as much as anyone else."
They added: "If Charlie receives this treatment and it does work like the Dr in America thinks, it won't be just Charlie's life that has been saved, it will be many more children in the future, who are born with this horrible disease and it will open up other trials on other similar genes."
The family are pinning their hopes on a new treatment available in the US, called nucleoside bypass therapy, which could potentially repair Charlie's mtDNA and help it synthase again by giving him the compounds that his body isn't able to produce.
Charlie, who was born on August 4 last year, was perfectly healthy but his health started to decline soon after.
He was taken to hospital at eight weeks old and has not been allowed out since when he was diagnosed with the rare condition only affecting 15 other people in the world.
The case was escalated to the High Court, with Mr Justice Francis asked to make the decision about whether doctors should withdraw life support treatment from the seven-month-old.
What is mitochondrial depletion syndrome?
Mitochondrial depletion syndrome is a rare recessive disorder that disrupts the body's ability to provide energy to the body's muscles, kidneys and brain.
The condition sees muscles rapidly weaken before the body goes into respiratory failure.
The most common cause of death is pulmonary infection with only a few patients surviving to their late childhood and teens.
There are currently no cures for the condition.
Katie Gollop QC, for GOSH, said: 'There is no dispute about the diagnosis. What is under discussion is whether the treatment being considered by the family, and which has already been considered and not adopted by Great Ormond Street, is a possibility at all and to what benefit.
";Whether this case depends on getting records, personally I have doubts."
The court heard that the American hospital had "already accepted the child as a patient, subject to financial considerations".
Representing the family, Sophia Roper told the court: "There is a dispute about his current presentation. The parents believe he is in much better shape than the hospital does."
While the judge continues his deliberations, more than £95,000 has so far been raised for the family.
Summing up their appeal, the parents wrote: "We need to change things and show how determined parents can forge a path for other families encountering similar obstacles.
"We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives.. hopefully starting with Charlie".
To support the family,