Parents’ heartbreak at judge giving them a month to prove their desperately ill baby can be kept alive AGAINST doctors’ wishes
The couple are fighting Great Ormond Street Hospital to be able to take their son to America for treatment
THE parents of a baby with a rare condition have spoken out of the nightmare of being given just one month to save the tot's life.
Seven-month-old Charlie Gard suffers from mitochondrial depletion syndrome with parents Connie Yates and Chris Gard battling to take him to the United States for treatment they hope will save his life.
"But we are grateful that we have this month to save Charlie. We have already done a huge amount of research into his condition but we will be working round the clock."
The 31-year-old said the couple had seen unpublished research from the US that gave them "real hope" that Charlie's life could be saved.
She said: "If we had any doubt that the treatment he plans for Charlie was not in his best interests - or it was not bona fide medical treatment - we would simply not even consider it."
The court heard that Charlie is deaf and cannot cry, which makes it difficult to assess if he is suffering, with the tot's lungs so weak he needs an artificial ventilator to stay alive.
Mr Justice Francis on Friday set a date for the hearing of April 3.
He said: "I have read the statements in the bundles. 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."
Doctors believe that Charlie "should not undergo nucleoside bypass therapy" in America and should be allowed to die with dignity.
Mr Justice Francis said: "This is one of the saddest types of cases that can come before these courts."
The judge noted that there had "already been a second opinion from a hospital in Spain," who took the view that Charlie "cannot be effectively treated".
Charlie was born on August 4 last year and initially seemed healthy, but his health quickly declined.
He has not been out of hospital since he was aged eight weeks and diagnosed with the rare condition, which is only known to affect 15 other people in the world.
Charlie's parents are trying to raise £1.2m to cover the cost of the treatment and have so far raised just over £80,000.
reads: "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.
"We understand that rare diseases don't get enough funding for research but why should that be a reason for a child to die?!"
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."
It is understood that the little boy was accepted as a prospective patient on Wednesday.
Mr Justice Francis asked if Charlie would be able to make the flight to America, to which Ms Gollop replied: "I think there may be some evidence about the effect of pressure on him. Other than that, I think it is the financial consideration."
Sophia Roper, for the family, said: "There is a dispute about his current presentation. The parents believe he is in much better shape than the hospital does."
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