Who is Charlie Gard, what is mitochondrial depletion syndrome and what have his parents and Donald Trump said after the European Court ruling?

The tot’s life support is due to be switched off after his parents’ heartbreaking battle

THE parents of Charlie Gard, the baby suffering from a rare genetic condition, have seen Donald Trump wade into the fight to try and save the stricken tot.

Connie Yates and Chris Gard suffered heartbreak after Europe’s top human rights court rejected their plea to intervene in the case of their son. UK courts have ruled Charlie should be allowed to “die with dignity”. However the US President’s intervention could change the situation.


In the wake of the European Court of Human Rights’ devastating decision, millions of supporters got #JeSuisCharlieGard trending on Twitter to celebrate incurable tot’s life.

Here’s the lowdown on the heartbreaking case…

Who is Charlie Gard?

Charlie Gard is just ten months old but the fight for his life has touched the world.

major fundraising campaign was set up to pay for pioneering treatment in the USA which his mum and dad, Connie and Chris, hoped would save his life.

The tot is in the “terminal stages” of a disease called mitochondrial DNA depletion syndrome, after both of his parents were unknowingly carrying the faulty gene.

Charlie is said to be one of only 16 people to have ever had the condition and his desperate mum and dad have been unable to find a treatment in the UK for him.

Doctors at Great Ormond Street Hospital said Charlie should be allowed to die in dignity and applied for permission to have his ventilator switched off.

But his parents and supporters have been fighting for him to be given a final chance, and raised £1.3million so he can be sent to America for treatment.

His dad made a desperate plea with the court in April to save his son, begging: “He deserves this chance.”

Clutching his son’s toy monkey, Chris Gard told the High Court: “My son is the apple of my eye and I would do anything for him.”

Charlie’s mum and dad say he is a “prisoner” in hospital and Great Ormond Street’s treatment has been “inhuman”.

What did the courts rule and why did they go to the European Court?

Charlie’s distraught parents were told by a judge at the High Court on April 11 that his life support machine can be turned off.

The court sided with doctors against the couple, ruling that it would be cruel to try and extend Charlie’s life further.

Mr Justice Francis said he had made the decision with the “heaviest of hearts” but with “complete conviction” for Charlie’s best interest.

On May 2, the couple took their fight to the Court of Appeal where they begged senior judges not to stop them trying to save their badly brain-damaged son.

Connie and Chris hired new lawyers, from Harris Da Silva Solicitors, for the second chance at saving their son’s life.

Three Court of Appeal judges upheld the High Court ruling on May 25.

But the tot was given a last minute reprieve when Britain’s Supreme Court agreed to review the case, hours before his life support machine was due to be switched off.

Charlie’s parents feared his life would be ended at midnight on May 31, but he remained on life support until the Supreme Court made a decision.

A preliminary hearing was heard on Thursday June 8, before the highest court in the land ruled that Charlie’s life support must be switched off.

The family vowed to fight until the “bitter end” to save Charlie and their lawyers took the case to the European Courts to challenge British laws over parental rights.

But on June 27, the European Court of Human Rights ruled that they would not intervene in the case – a ruling which means his life-support was expected to be switched off on Friday June 30.

After a heart-wrenching plea from Chris and Connie, Great Ormond Street agreed to grant them more time with little Charlie to say goodbye.

They were devastated after being told they could not take the little lad home to die.

Describing the decision as “final”, a statement issued by the court said judges “endorsed in substance the approach by the domestic courts and thus declared the application inadmissible”.

What did Charlie Gard’s parents say after the European Court ruling?

His devastated parents broke down in tears after revealing their final wish that their little boy would die at home has been denied.

Describing his baby boy as a “trooper” and “soldier”, dad Chris wept as he said: “He will fight to the very end but we’re not allowed to fight for him anymore.

“We can’t even take our own son home to die. We have been denied that.”

Mum Connie said they had always vowed to have Charlie come home if doctors ruled he would no longer be treated

She said: “We chose to take Charlie home to die. That is our last wish, if it went this way, the way that it’s gone.

“We promised out little boy every single day that we would take him home. That is a promise we thought we could keep.”

The couple said they had even offered to pay privately to have Charlie returned home, to have a bath and sleep in his cot, but were still been refused by the hospital.

The pair shared a heartbreaking photograph of them curled next to the little boy’s hospital bed.

What is mitochondrial DNA depletion syndrome?

Mitochondrial DNA depletion syndrome refers to a group of disorders that cause affected tissues to suffer from a significant drop in mitochondrial DNA.

The DNA is found in the mitochondria of cells – an organelle found in most cells in which respiration and energy production occur.

This means, as in Charlie’s case, that sufferers do not get energy to their muscles, kidneys and brain.

MDS is typically fatal in infancy and early childhood.

There is currently no cure but some treatments have shown a reduction in symptoms.

What is nucleoside bypass therapy?

Nucleoside bypass therapy is a new treatment that is taken as an oral medication.

It could theoretically have repaired Charlie’s mitochondrial DNA and helped it synthesise again by giving him the naturally occurring compounds his body isn’t able to produce.

A US expert said 18 people have been treated with nucleoside bypass therapy.

But he added that none of them were in a condition as severe as Charlie’s.

What is the Charlie Gard GoFundMe campaign?

The Charlie Gard GoFundMe page was set up by the tragic tot’s parents to raise money to take him to the US for the pioneering treatment.

After three months of fundraising, Connie and Chris’s page surpassed its £1.3m target.

Thanking those who donated, she said: “Charlie will die knowing that he was loved by thousands.

“Thank you for all your support.”


 

Donald Trump has offered to help the parents of a critically ill baby who have lost a legal fight to take him to the United States for treatment.

The US president said he would be delighted to help Charlie Gard, whose parents wanted him to undergo a therapy trial in the US to treat a rare genetic condition.

Members of the Trump administration have talked to the 10-month-old’s family, a White House spokeswoman said on Monday. “Our goal is not to pressure but simply to be helpful if possible in this very difficult and heartbreaking situation,” Sarah Huckabee Sanders told the Guardian.

Helen Aguirre Ferré, the director of media affairs at the White House, added: “Upon learning of baby Charlie Gard’s situation, President Trump has offered to help the family in this heartbreaking situation.

“Although the president himself has not spoken to the family, he does not want to pressure them in any way, members of the administration have spoken to the family in calls facilitated by the British government. The president is just trying to be helpful if at all possible.

“Due to legal issues, we cannot confirm the name of doctor or hospital where the baby could be treated in the United States.”

It is understood an American hospital has offered to treat Charlie free of charge, although his family has received donations totalling more than £1.3m to take him across the Atlantic for therapy.

Last week the European court of human rights rejected an appeal by Chris Gard and Connie Yates, Charlie’s parents, to be allowed to take their son to the US, following a similar ruling by the UK’s supreme court. Medical specialists had argued that the treatment was experimental and would not help.

The couple are now spending the last days of their son’s life with him, after being given more time before his life support is turned off.

Charlie, who suffers from a rare genetic condition and has brain damage, is being cared for at Great Ormond Street hospital in London.

Last week the European court of human rights rejected an appeal by Chris Gard and Connie Yates, Charlie’s parents, to be allowed to take their son to the US, following a similar ruling by the UK’s supreme court. Medical specialists had argued that the treatment was experimental and would not help.

The couple are now spending the last days of their son’s life with him, after being given more time before his life support is turned off.

Charlie, who suffers from a rare genetic condition and has brain damage, is being cared for at Great Ormond Street hospital in London.

Trump tweeted on Monday:

It comes after Pope Francis called for Charlie’s parents to be allowed to “accompany and treat their child until the end”.

On Monday the Vatican-owned Bambino Gesù hospital in Rome said it was to ask Great Ormond Street if Charlie can be moved there for treatment.

The Italian hospital’s offer came as an investigation by the news agency AP uncovered evidence that Bambino Gesù put profits before patients. Overcrowding and poor hygiene between 2008 and 2015 contributed to deadly infection, including one 21-month superbug outbreak in the cancer ward that killed eight children, AP said.

Charlie’s parents, both in their 30s and from Bedfont, west London, asked European court judges in Strasbourg, France, to consider their case after judges in the high court, court of appeal and supreme court in London ruled in favour of GOSH doctors. But last week the European court of human rights refused to intervene.

British courts have already concluded that it would be lawful for the hospital to withdraw life sustaining treatment because it was likely Charlie would suffer significant harm if his suffering was prolonged without realistic prospect of improvement. The experimental therapy, the courts maintained, would produce no effective benefit.

During a hearing at the high court in April, Mr Justice Francis considered evidence from a specialist who would oversee any treatment Charlie had at a hospital in the US.

The specialist, who cannot be named for legal reasons, said therapy would provide a “small chance” of a meaningful improvement in Charlie’s brain function.

He told the court via a telephone link from America: “It may be a treatment, but not a cure. [Charlie] may be able to interact. To smile. To look at objects.”

Charlie has a rare inherited disease – infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDS). The condition causes progressive muscle weakness and brain damage.

Theresa May’s official spokesman said Downing Street was aware of the president’s tweet about Charlie, but made no further response other than to say: “All our thoughts are with him and with his family.”

 

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