Charlie Gard’s parents angry that baby’s lawyer is head of charity that backs assisted dying

Charlie Gard’s parents have privately expressed their concern after discovering that the lawyer appointed to represent their 11-month-old son in court heads a charity that backs assisted dying.

Victoria Butler-Cole, who speaks on Charlie’s behalf in court, is chairman of Compassion in Dying, a sister organisation to Dignity in Dying which campaigns for a change in the law to make assisted dying legal in the UK. Dignity in Dying used to be called the Voluntary Euthanasia Society.

The two charities share the same chief executive and media team and trustees – such as Mrs Butler-Cole – can only sit on one charity if they support the aims of the other. Mrs Butler-Cole was appointed to the role by the publicly-funded state body Cafcass which acts in the best interests of children in court cases.

Charlie Gard suffers from a rare condition

Connie Yates and Chris Gard, from Bedfont, in west London, believe they, as his parents, should speak for Charlie in court hearings that are deciding his fate. They don’t believe their son should have a guardian representing him in court.

Charlie suffers from a rare genetic condition that has left him severely disabled and suffering brain damage.

Great Ormond Street Hospital is seeking to switch off his life support machine and has been backed in court by Charlie’s state-appointed guardian, represented by Mrs Butler-Cole.

A source close to the parents told The Daily Telegraph: “The family find it astonishing that the quango that appointed the barrister to act in the interests of Charlie Gard is the chairman of Compassion in Dying, the sister body of Dignity in Dying, formerly known as the Voluntary Euthanasia Society. The implication is obvious. It looks like a profound conflict of interest.”

Charlie Gard is being cared for at Great Ormond Street Hospital

Mrs Butler-Cole said she was unable to comment while the High Court case was ongoing.

Today Dr Michio Hirano, an American neurosurgeon, who claims to have pioneered an experimental treatment he says can help Charlie, will examine the boy after flying in from New York.

Compassion in Dying said it was wrong to suggest there was any conflict of interest between Mrs Butler-Cole’s role in representing Charlie’s guardian in court and her view that adults with full mental capacity should be allowed to plan their own death.

A charity spokesman said: “There are clear differences between this case, the work of Dignity in Dying and the work of Compassion in Dying. The Charlie Gard case is about making decisions in the best interests of a seriously ill child.”

The High Court ruled in April that Charlie should be allowed to “die with dignity”, a decision confirmed by the Court of Appeal, Supreme Court and the European Court of Human Rights.

But Great Ormond Street referred the case back to the High Court after Dr Hirano, backed by other experts, claimed the ground-breaking therapy might help Charlie.

Timeline | Charlie Gard case

4 August 2016: Charlie Gard was born.

September 2016: Charlie was taken ill and diagnosed with a rare genetic condition at Great Ormond Street Hospital. The condition causes progressive muscle weakness and brain damage.

January 2017: Charlie’s parents set up a GoFundMe page to pay for Charlie to travel to the US and receive an experimental nucleoside therapy.

3 March 2017: Great Ormond Street bosses asked Mr Justice Francis to rule that life support treatment should stop.

The judge was told that Charlie could only breathe through a ventilator and was fed through a tube.

11 April: Mr Justice Francis said doctors could stop providing life-support treatment after analysing the case at a hearing in the Family Division of the High Court in London.

He concluded that life-support treatment should end and said a move to a palliative care regime would be in Charlie’s best interests.

3 May: Charlie’s parents then asked Court of Appeal judges to consider the case.

23 May: After analysing the case, three Court of Appeal judges dismissed the couple’s appeal two days later.

8 June: Charlie’s parents lost their fight in the Supreme Court. Charlie’s mother broke down in tears and screamed as justices announced their decision. She was led from the court by lawyers.

20 June: Judges in the European Court of Human Rights started to analyse the case after lawyers representing Charlie’s parents made written submissions.

A European Court of Human Rights spokeswoman said that “in light of the exceptional circumstances of this case, the court has already accorded it priority and will treat the application with the utmost urgency.”

27 June: On Tuesday, European court judges refused to intervene. A Great Ormond Street spokeswoman said the European Court decision marked “the end” of a “difficult process”.

She said there would be “no rush” to change Charlie’s care and said there would be “careful planning and discussion”.

2 July: Pope Francis sent a message of support to Charlie’s parents, saying that life support must not be turned off until Charlie dies of natural causes. The Vatican-owned Bambino Gesù pediatric hospital in Rome said it was willing to continue Charlie’s end-of-life care.

3 July: US President Donald Trump also sent a message of support to Charlie’s parents.

10 July: Chris Gard and Connie Yates returned to the High Court to present fresh evidence about treatment they said could prolong 11-month old Charlie’s life.

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