Charlie Gard has died following his near year-long battle with a rare genetic disease in London
London,July29:Charlie Gard has died following his near year-long battle with a rare genetic disease.
The terminally ill baby’s life support was withdrawn at a hospice, a day after the High Court ordered his transfer from Great Ormond Street Hospital (GOSH).
In a statement, his mother Connie Yates said: ‘Our beautiful little boy has gone, we are so proud of you Charlie.’
GOSH said everyone at the hospital ‘sends their heartfelt condolences to Charlie’s parents and loved ones at this very sad time’.
Born a ‘perfectly healthy’ baby on 4 August last year, Charlie’s later fight against a rare inherited disease generated headlines around the world.
His parents’ legal bid to transfer their son from GOSH to the US for experimental treatment attracted the support of both the Pope and President Trump.
But, with UK courts consistently agreeing with Charlie’s doctors that keeping him on life support was not in the baby’s best interests, his mother and father ended their high-profile legal battle on Monday.
Connie Yates and Chris Gard lost a subsequent High Court bid to secure their son several days of life support treatment, with GOSH describing their plans as not ‘in any way viable’.
Ms Yates said she was ‘shocked’ by the ruling, adding that GOSH had ‘denied us our final wish’.
Charlie is believed to have been only the 16th person to ever be diagnosed with infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS).
His condition meant he had a decreased number of the cells needed for respiration and energy production in muscles, the liver and brain.
Charlie could not move his arms or legs, was only able to breathe through a ventilator, had deafness and suffered severe epilepsy.
After finding an American doctor willing to offer the boy experimental treatment, Ms Yates set up a crowdfunding page in January in order to pay for the trial therapy.
After attracting celebrity backing and widespread support on social media, the ‘Charlie’s Fight’ campaign went on to raise more than 1.3m through donations from more than 84,000 people.
However, in April, a High Court judge agreed with GOSH that the experimental treatment was ‘very unlikely’ to work and ruled doctors could withdraw all treatment except end-of-life care in the ‘best interests’ of Charlie.
Charlie’s parents launched unsuccessful appeals all the way up to the Supreme Court and failed to convince European judges to take on the case.
Their fight returned to the High Court in early July, so judge Mr Justice Francis could consider any new evidence.
During the hearing, Ms Yates broke down as the parents were told by a GOSH representative that a new scan on their son made for ‘sad reading’.
Paying tribute to their son following the end of their legal challenge on Monday, Ms Yates and Mr Gard described him as an ‘absolute warrior’.
Mr Gard said: ‘Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you.
‘We had the chance but we weren’t allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy.’