Baby Charlie’s parents vow to fight on for new treatment
THE parents of terminally ill baby Charlie Gard have made a passionate vow to carry on their fight for him to receive an experimental therapy.
Connie Yates and Chris Gard spoke out after “reluctantly” leaving their son’s hospital bedside to deliver a 350,000-name petition to Great Ormond Street Hospital, London, calling for doctors to allow their son to travel to the US for treatment.
The couple argue that 11-month-old Charlie, who has a genetic disorder that has left him reliant on a life support system, should be given access to a new form of therapy abroad that could help alleviate some of his symptoms.
Doctors, however, have argued the experimental treatment will not help and may simply prolong his death.
Instead, they have agreed Charlie’s life support should be removed, and palliative care given, so he can pass away peacefully.
The prolonged dispute between Charlie’s parents and the hospital has led to a series of court hearings and thrown an international spotlight on their plight.
Yesterday, as the couple delivered the petition, it emerged two United States Republican congressmen have said they will table legislation to give Charlie and his family US resident status in a bid to allow them to travel there for experimental treatment.
Pro-life Congressmen Brad Wenstrup and Trent Franks said they would introduce a private bill to Congress when lawmakers return from recess next week in an attempt to save the ill baby.
In a joint statement, the US lawmakers said: “Our bill will support Charlie’s parents’ right to choose what is best for their son, by making Charlie a lawful permanent resident in the US for him to receive treatments that could save his life. Should this little boy be ordered to die because a third party, overriding the wishes of his parents, believes it can conclusively determine that immediate death is what is best for him?”
Their move comes as the case is due to return to the High Court today after the hospital said it had seen claims of new evidence relating to the potential therapy.
Great Ormond Street Hospital said in a statement: “Two international hospitals and their researchers have communicated to us … that they have fresh evidence about their proposed experimental treatment.
“We believe, in common with Charlie’s parents, it is right to explore this evidence.”
Calling for her son to be given the experimental medication, nucleoside, Ms Yates said: “He’s our son, he’s our flesh and blood. We feel it should be our right as parents to decide to give him a chance at life. There is nothing to lose, he deserves a chance.”
She said the oral medicine has “up to 10 per cent chance of working” and has “no known major side effects”.
Charlie is blind, deaf and unable to communicate or breathe unaided. Despite doctors’ claims, his father said there is no evidence Charlie has “catastrophic brain damage”.
He added: “He should have had this chance a long time ago now. They said it wasn’t fair to leave him on the ventilator for three months for a treatment they didn’t think was going to work. He’s now been left for seven months with no treatment.”
Charlie inherited the faulty RRM2B gene from his parents. It affects the cells responsible for energy production and respiration and leaving him unable to move or breathe without a ventilator.
His case has received increasing international attention after US President Donald Trump tweeted his support for the couple last week. Pope Francis has also made public his support, and offered space for Charlie at the Vatican’s paediatric hospital.
The family’s supporters have raised more than £1.3m to help fund Charlie’s treatment. Some had travelled from the US to support the couple yesterday, with banners and placards reading “Save Charlie Gard”.