Charlie Gard's family spokesman blasts authorities

Charlie Gard's family spokesman blasts authorities

Alasdair Seton-Marsden (pictured) argued that if Charlie's parents were rich they would be able to travel to the US for treatment

Critically-ill baby Charlie Gard is being held 'prisoner by the NHS and the state,' according to a spokesman for the toddler's family.

Alasdair Seton-Marsden, who represents Charlie's family, argued that if his parents Chris Gard and Connie Yates were rich they would be able to travel to the US for treatment.

The 11-month-old suffers from a rare genetic condition but his parents say claims by his doctors that he is irreparably brain damaged are false. 

The spokesman told Sky News: 'Baby Charlie wouldn't have become what is essentially - and these are my words - a prisoner of the state.

'The child is effectively being taken prisoner by the NHS and by the state.'

He added: 'Had they been not ordinary people but wealthy parents, they could have gone into a private hospital say in London and if they didn't like the treatment there they might say, "thank you very much - your nurses are fantastic, you're general clinical care is fantastic but we need specialist care. Can we go to another hospital in the UK or in London or we'll take him abroad?"'

This latest development comes hours after a public row with Great Ormond Street over whether Charlie's parents would be allowed to attend a crucial meeting with his doctors. 

Dr Michio Hirano, the US doctor who wants to save him, has agreed to fly to the UK and examine the baby on Monday - and will then meet his British medics to discuss whether he is brain damaged on Tuesday.

But Katie Gollop QC said Great Ormond Street thought it would be better if Charlie's par ents were excluded because clinicians may not be able to 'speak freely' with them there.

Charlie's father Chris Gard then shouted out 'he's our son' and Connie Yates started to shake her head angrily.

Their legal team then argued Miss Yates knows as much as the experts on Charlie's condition and Mr Justice Francis agreed she should attend Tuesday's meeting.

The 11-month-old (pictured) suffers from a rare genetic condition but his parents say claims by his doctors that he is irreparably brain damaged are false

This latest development comes hours after a public row with Great Ormond Street over whether Charlie's parents (pictured) would be allowed to attend a crucial meeting with his doctors

However, after further discussions the High Court agreed that Charlie's mother could attend the meeting with medical experts discussing her son's condition - as long as she understood she would need to remain quiet for parts of it.

The judge also revealed he would then make a final decision on the 11-month-old's fate on Tuesday July 25 after hearing Dr Hirano's views on Charlie's condition and what happened at the meeting.

Dr Hirano, who is a world expert on the nucleoside treatment being denied to Charlie, is from the Columbia University Medical Center in New York and will arrive in London over the weekend. 

Before the start of the latest hearing, the family of Charlie condemned as 'abhorrent' any threats of violence that might have been made against doctors or judges. 

Speaking on behalf of 'the entire family and their supporters', spokesman Alasdair Seton-Marsden said their attention had been drawn to 'certain threats' against the judiciary, barristers representing Great Ormond Street, and against doctors and nurses at the hospital.

He said: 'We absolutely abhor any suggestion of any threats or intimidation against members of the judiciary, legal profession or medical profession.'

He suggested anyone wanting to help the family should peacefully demonstrate, donate to their fund or sign their petition, adding: 'We absolutely abhor violence.'

Katie Gollop QC, for the hospital, also said they were seeking further imaging.

'The child is effectively being taken prisoner by the NHS and by the state,' the family spokesman said 

Connie Yates and Chris Gard listen as the American doctor offering to treat their son says he could have a 50/50 chance of showing improvement

She said: 'They do think there may be some benefit in further imaging. Firstly an MRI scan would allow a comparison of the size of brain to be done, and it would allow us to measure the brain in a way one hopes may be less open to erroneous interpretation.

'We don't want to upset the parents in any way and if that imaging they don't want, we are certainly in their hands. We have reached a stage where we do really need to make sure the best evidence is provided to court.'

US Harvard-educated doctor who may be Charlie's last hope

The American doctor who specializes in conditions like the one making Charlie Gard can be named. 

Dr Michio Hirano of Columbia University Medical Center in New York is an expert on nucleoside treatment he says could help the little boy.

Hirano's research focuses on mitochondrial diseases and genetic myopathies and he has treated others with conditions similar to Charlie's.

Six-year-old Art Estopinan has virtually the same genetic condition and is fighting it with the pioneering drugs therapy that is being denied to Charlie.

His father Art Sr said that he trusts Dr Hirano 'with his life'. 

Dr Hirano received his BA degree from Harvard College and M.D. from the Albert Einstein College of Medicine.

At the Columbia University Medical Center (CUM C), he did his neurology residency training and a post-doctoral fellowship in neuromuscular genetics.  

He is the son of a head of neuropathology and a Japanese teacher and he married a fellow neurologist at the Catholic Cathedral of St. John the Divine in New York.

Their wedding was reported in the New York Times.

 

She told the court she had asked the family's lawyer if they were prepared for the new imaging.

She added: 'Other patients have to be worked around this.'

Mr Justice Francis said: 'There are very many sick children in this hospital. I would hope that Mr Gard and Miss Yates will agree to whatever form of imaging will help resolve this issue.

'They need to know today because they have got many sick children who are critically. He isn't the only patient there.'

He told the family to indicate to the hospital later today whether they agreed to further scans. 

Charlie's parents, of Bedfont, south-west London, thought they had reached the end of the road last week, after four courts ruled in favour of Great Ormond Street Hospital (GOSH) doctors who said Charlie was brain-damaged beyond hope, and that it was kinder to let him die.

But Pope Francis and Donald Trump electrified the public campaign to 'save Charlie' with supportive tweets.

The court heard that White House staff contacted the American doctor shortly before he made his claims about Charlie. He then spoke with GOSH on July 4.

Two days later, a letter was sent by the doctor and six other experts in Charlie's condition, mitochondrial disease, to the hospital.

It led to GOSH asking the High Court to reconsider the claimed 'new evidence'. Mr Justice Francis warned he was 'absolutely not re-running the case'.

But it looks set to stretch into another week.

The proposed therapy is a drug called nucleosides. It has been used to treat several patients with a strain of the disease that affects muscles.

But it has never been tried on the strain that also affects the brain â€" the type Charlie has.

The US doctor said that since the last High Court hearing in March, tests on mice with a similar disease showed they lived longer and had improved brain function.

He added: 'We cannot fix or cure his disease … but I'm confident we can improve cognitive function.' He said Charlie's apparent brain damage could actually be a muscle problem ca using brain 'dysfunction', which the drug might fix.

The doctor said there was a 10 to 56 per cent chance of the therapy improving Charlie's weak muscles, and put the chances of improved brain function at 'significantly above zero per cent'.

Previously the court ruled there was no evidence the drug could cross the 'blood brain barrier'. But the US doctor put the chance at between 50 and 90 per cent.

Katie Gollop QC, for GOSH, said the hospital had 'no objection' to the doctor coming to Britain.  

Members of 'Charlie's Army' chanted support for the parents while taxi, bus and lorry drivers responded to their request to 'please beep for Charlie'

THE HIGH COURT JUDGE WHO WILL DECIDE CHARLIE'S FATE

Mr Justice Francis â€" set to hear Charlie Gard's case today â€" is one of the most junior High Court judges

Once described as 'the smoothest family law silk at the Bar', Mr Justice Francis â€" set to hear Charlie Gard's case today â€" is one of the most junior High Court judges.

He was appointed to the court's family division and awarded a knighthood last year.

Educated at Radley College, an independent boys' boarding school in Oxfordshire, he went on to study at Downing College, Cambridge.

The judge, who is married with three children, was called to the Bar in 1981 and in more than 30 years as a barrister he specialised in divorces of the wealthy.

In 1999 he was appointed a recorder, or part-time judge, and he achieved the rank of Queen's Counsel in 2002.

In 2011 he was made a deputy High Court judge.

The 59-year-old lists his hobbies in Who's Who as 'sailing, theatre and wine', and is a member of the Royal Solent Yacht Club. In 2014 the Bar Awards named him 'Family Silk' of the year while Chambers and Partners, which ranks lawyers, said he had 'terrific attention to detail and is deadly in cross-examination', and 'doesn't miss anything'.

The Legal 500, another legal rating service, has described Mr Justice Francis as 'the smoothest family law silk at the Bar', adding: 'He is extremely knowledgeable and a great advocate.'

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