Fight’s not over for baby Charlie Gard’s parents
LONDON: The parents of terminally ill Charlie Gard are to join a protest outside a London hospital after vowing the fight for their baby to receive experimental treatment “is not over”.
Thousands of signatures have been gathered calling on doctors at Great Ormond Street Hospital (Gosh) to allow the 11-month-old to travel to the US.
In posts on the @charliesfight Twitter account, the family thanked supporters for sharing their son’s story across the world.
Charlie has a rare genetic disorder which causes brain damage and prevents muscles developing.
His parents, both in their thirties and from Bedfont, west London, want to take their son to a hospital in the US for experimental therapy they believe could prolong and improve his life.
But they lost a lengthy legal battle after successive judges ruled in favour of doctors at Gosh, who argued the treatment would not improve the infant’s quality of life and say his life-support machine should be switched off.
A hugely emotional public debate has raged worldwide over Charlie’s case, with US President Donald Trump and Pope Francis each wading in.
The @charliesfight account, run by family members, tweeted: “A huge thank you to all you out there supporting and sharing Charlie’s story! Please keep going! The fight is not over!”
Charlie’s parents have spoken to the father of Ashya King, a young cancer patient whose parents took him out of hospital and abroad for proton beam therapy not offered on the NHS, The Sun reported.
Brett King, 54, accused Gosh doctors of making a “boardroom decision” on Charlie’s case and said: “There’s no logic in refusing them.”
But Gosh said its doctors believed the treatment would be “futile” and could prolong the boy’s suffering.
Charlie’s family were joined by an American pastor who travelled to the UK to pray at his bedside and tweets from the campaign account suggested he had initially not been allowed in the neonatal intensive care unit.
But Patrick Mahoney, a pastor at the Church on the Hill in Washington DC, later said he had been able to pray “for a miracle” alongside the parents.
It comes after Gosh said last week that it had applied to the high court for a fresh hearing “in light of claims of new evidence relating to potential treatment for his condition”.
The decision was prompted by claims of “new information” from researchers at the Vatican’s children’s hospital.
Clinicians from the Bambino Gesu paediatric hospital’s neurosciences department said tests in mice and patients with a similar, but not the same, genetic condition as Charlie had shown “dramatic clinical improvements”.
Charlie inherited the faulty RRM2B gene from his parents, affecting the cells responsible for energy production and respiration, leaving him unable to move or breathe without a ventilator.
The therapy is not a cure for the condition.