Feeds:
Posts
Comments

US MDDS expert Michio Hirano

Around the world, millions are holding their breath during this crucial two day period for baby Charlie Gard, still on life-support in a London hospital, despite the hospital’s strong opposition.

Charlie is being examined onsite Monday by Michio Hirano, a neurologist at Columbia University Medical Center, who is a world-renowned expert in myopathies and other neuromuscular diseases similar to Charlie’s devastating problems, and at least one other outside physician.

Dr. Hirano is meeting with Charlie’s current immediate care team and other specialists, including a doctor from the Vatican children’s hospital.  According to the Daily Mail, the two doctors “will examine Charlie and will have access to his notes and clinical data, including medical images.” Another story suggests a third doctor, from Spain, will also take part in the evaluation.

As reported this morning in the Times/the Brief, “there is still a chance for a mediated settlement” in the legal proceeding surrounding Charlie, because Mr. Justice Francis of the UK High Court said Friday,

that if all parties agreed on Charlie being transferred to the U.S. for treatment, ‘I will agree it with you.’ ”

The problem, obviously, is in the “all” part. It is almost inconceivable that the hospital which has held Charlie virtually hostage will agree to allow him to travel to the U.S. (See below.)

It would appear that the transfer out of London’s Great Ormond Street Hospital (GOSH) for alternative treatment  (sought since January by Charlie’s parents Chris Gard and Connie Yates) can only happen if the original judge now rehearing the matter–Justice Nicholas Francis–becomes convinced:

  1. that a multi-disciplinary panel agrees that recent scientific developments merit a new look at Charlie’s situation, and
  2. GOSH clinicians change their mind that Charlie is in an irredeemable condition, unworthy of experimental therapy.

Charlie Gard has MDDS

That is why, at this moment, a uniquely qualified New York scientist, Dr. Michio Hirano, is in London evaluating Charlie, who has MDDS (Mitochondrial DNA Depletion Syndrome). After thirty years of studying this condition, the Harvard-trained Dr. Hirano has pioneered an oral additive that mitigates the MDDS deficiency in which every cell of the body cannot process and replenish essential energy.

In testimony given Thursday via videoconferencing, Dr. Hirano said there was an “11% to 56% chance of clinically meaningful improvement” in muscular function with the proposed treatment and that he expected a “small but significant” improvement in Charlie’s brain function.

According to the Times’ report, Dr. Hirano is meeting today with the GOSH team treating Charlie,  “and possibly two other specialists – one from the Pope’s pediatric hospital in Rome and one from Barcelona.”

Dr. Hirano was given GOSH privileges and ushered onsite through the back door this morning, reports the Daily Mail. A meeting with all clinicians and Charlie’s mother will take place either today or tomorrow.

The High Court will then rule on Charlie’s case on or about July 25, ironically ten days before Charlie’s first birthday.

PARENTS’ UPHILL BATTLE
GOSH is a children’s hospital whose slogan is “the child first and always.” Here are some excerpts from the website’s updated statement on the Charlie Gard matter.  None of them suggest they are open to releasing Charlie.

  • Our doctors have explored every medical treatment, including experimental nucleoside therapies.
  • Independent medical experts agreed with our clinical team that this treatment would be unjustified.
  • [we’re] bound by the ruling of the High Court which expressly forbids us from transferring Charlie for nucleoside therapy anywhere…
  • The ruling also states that it is in Charlie’s best interests for artificial ventilation to be withdrawn, and for his clinicians to provide him with palliative care only.

Officially, GOSH has not changed its mind about the “futility” of treating Charlie. Its own staff admittedly had considered using Dr. Hirano’s nucleoside bypass therapy on their own premises for Charlie, but reversed course in January, after what they said was a 17 day occurrence of epileptic seizures that left him irreversibly brain-damaged.

Expert testimony last Friday, however, raised doubts that there was MRI confirmation of that. Justice Francis ruled that if Charlie’s parents agreed, another scan could be taken this past weekend.

Also on Friday, Charlie’s parents exploded with frustration in court when the hospital said they should be excluded from this week’s make-or-break physician meetings. The Daily Mail recounts that, after GOSH attorney Katie Gollop said clinicians may not be able to “speak freely” with the couple present, Chris Gard shouted, ”’He’s our son!”

Justice Francis initially agreed with Gollop, but then was persuaded by the argument from the parents’ attorney,

“that it would be unfair for the baby’s mother to be excluded while Great Ormond Street doctors – with their ‘incredibly entrenched view’ of Charlie’s fate – were allowed in.”

The judge granted permission for Connie to attend the meeting with her promise not to “disrupt” the experts’ debate.

Atty Butler-Cole

What continually astounds followers of this saga is how Charlie’s admirable parents are at the mercy of the government, and are denied decision-making rights. Chris and Connie believe strongly that they should be their son’s voice in court proceedings deciding his fate.

Instead, as examined in the Telegraph, Charlie’s “voice” in these adversarial proceedings is a guardian represented by a publicly-appointed attorney with “what looks like a profound conflict of interest.”  The attorney,  whose role is to protect Charlie’s “best interests” in court, has been Victoria Butler-Cole, chairman of Britain’s Compassion in Dying, the sister body of Dignity in Dying, formerly known as the Voluntary Euthanasia Society. This disturbs the Gard family, according to the Telegraph’s inside source.

Against unprecedented adversity, Chris and Connie have fought to secure “just a chance” for Charlie to get the pioneering MDDS oral treatment from Dr. Hirano. Today, against all odds, that result is closer than ever.

Charlie Gard’s parents, fighting to remove him from London hospital

UPDATE, July 14: Judge announces today he’ll rule July 25, following results from Columbia Univ. neurology prof. Michio Hirano, who will examine Charlie July 17&18 in London hospital.

A decision whether London parents Chris Gard and Connie Yates, will be allowed to leave the country to obtain experimental treatment for their rapidly failing son Charlie  will be held off at least another day or two after a hearing this afternoon in the UK High Court of Justice Nicholas Francis.

That hearing was not without fireworks and a dramatic exit by the parents who vehemently insisted their views had been misrepresented by Justice Francis.

No final court ruling is expected for days, for at least two reasons:

1)   further measurement of Charlie’s head–to verify/repudiate brain loss– was ordered to be provided tomorrow. The hospital is insisting that there has been no growth in the size of Charlie’s skull over the past three months since Judge Francis gave the hospital permission to disconnect Charlie’s ventilator. The parents say flatly that is not so.

2)   an interdisciplinary panel is now to be convened immediately to attempt to bridge the gap between what the hospital is contending and what the parents and other outside experts on their side are saying.

UK Justice Francis

Charlie is very ill. He has an exceptionally rare and debilitating chromosomal condition –encephalomyopathic mitochondrial DNA depletion syndrome (MDDS)–in which his cells cannot replenish essential energy. However a natural compound, orally administered, has shown some success as a treatment in the United States. Chris and Connie have been working feverishly since January to get their son to the U.S. to receive that alternative treatment.

New York-Presbyterian Hospital/Columbia University Medical Center and one other unnamed medical facility have offered to treat Charlie, either as an inpatient or by shipping the experimental nucleoside therapy drug to London’s Great Ormond Street Hospital (GOSH). But GOSH insists that the therapy has only worked on a variant of Charlie’s condition and would be pointless, if not also painful to the eleven month old child.

COURT VOLATILITY
Justice Francis emphasized going in that Thursday’s  proceeding was focused solely on new medical developments relevant to Charlie’s current status.

GOSH had requested the hearing after British Prime Minister Theresa May told Parliament she was confident the hospital would not ignore new developments. GOSH subsequently acted to request this hearing after receiving two letters – one from seven doctors and another from an attorney representing Charlie’s parents – claiming the chances of the treatment being successful were higher than previously thought.

Grant Armstrong, the parents’ lawyer in today’s hearing, presented testimony from medical experts that the chances were between 90 and 100% that the treatment being sought in the U.S. could “cross the blood-brain barrier” with as much as a 60% chance of Charlie experiencing muscular improvement, and “meaningful brain recovery.”

Fireworks erupted two hours into the hearing, however, when the judge referenced previous comments to the effect that Charlie’s parents would not want their son to continue living in his current condition were there no prospect of improvement.

According to press accounts, (the Guardian, CNN and AP) Chris Gard punched a table, and Connie exclaimed,

I never said that! We said he’s not in suffering and in pain. If he was we wouldn’t be up here fighting for that.

The judge attempted to clarify that one or the other of the parents had said it, but the couple abruptly left the courtroom. “I thought this [hearing] was supposed to be independent [impartial],” Chris said,

The hearing broke for lunch shortly afterwards and Charlie’s parents subsequently returned.  Justice Francis apologized for the earlier conflict, assuring them that the transcript of what they said has been found and they won’t be misquoted. What exactly he meant by that–for example whether he was retreating from what he had said–was not clear.

OVERSEAS EXPERT REBUTTAL
Questioning of the United States professor of neurology and specialist in mitochondrial disease took place via separate audio and video links. (Under Supreme Court order, none of the medical specialists are named.)

As tweeted by Sky News reporter, Jim Old who was in the courtroom, the unidentified expert said this treatment was the compassionate option. A model using mice genetically altered to match Charlie’s exact genes wouldn’t be available for at least six months.

The expert also pointed to the results so far as showing five out of nine patients with a nearly identical condition were able to reduce the amount of time they spent on a ventilator by eight hours a day or more, and that one patient was weaned off the ventilator altogether.

He  also called into question GOSH’s assertion that Charlie had brain damage, saying that MRI and EEG scans indicated “disorganization of brain activity but that does not necessarily indicate structural damage”.

Ultimately,this U.S. professor rebutted the assessment put to the court in the past that the chances of improving Charlie’s condition were “vanishingly small.”

After some long consultations among the attorneys, the judge announced the need for a multi-disciplinary meeting to take place “in a matter of days” in an attempt to hammer out a “consensus” opinion on how to proceed.

Friday’s court session is set for 2 pm to assess how close both parties are to arranging that meeting.

Fox & Friends with Charlie Gard spox

PARENTS’ ORDEAL CONTINUES
Gard family spokesman, Alisdair Seton Marsden, relayed that Connie and Chris are working under trying conditions “just to give Charlie a chance”…they feel strongly that, “if he’s still fighting, we’re still fighting.”

According to an interview on Fox & Friends this morning with Mr. Marsden, the special compound that Charlie’s parents want him to receive would merely be added to his feeding tube and medical advisors expect a 2-8 week timeline for seeing results. “It’s an additive found in corn flakes, how controversial can that be?” remarked the interviewer.

Mr. Marsden expressed the couple’s deep gratitude for the U.S. hospital offers of aid and the support from President Donald Trump and Vice-President Mike Pence. He revealed that an Air Ambulance had been ready for weeks to usher the family overseas and that the new petition in support of Charlie (citizenGO.org) was racing toward one million signatures.

Jan Pauls

Today in Hutchinson, funeral services are being held for a stalwart pro-life leader, former State Rep. Jan Pauls, who died last Wednesday at age 64. She had endured a variety of health challenges over the last few years.

Pauls was a Reno County attorney who served in various legal positions, including county district judge.  She was appointed in Aug. 1991 to fill the district 102 state rep vacancy under pro-life Democrat Gov. Joan Finney.

Pauls served 26 years at the Statehouse, until 2017– the last two years as a Republican. The withering of the pro-life position and other policies in the Democrat Party platform caused her, in her words, “to go from Blue Dog Democrat to Blue Collar Republican.”

UNWAVERING VOICE FOR LIFE
As a legislator, Paul’s absolute defense for the unborn was there from the start and never wavered. She not only voted pro-life, she regularly articulated compelling support for it–and against hostile proposals– at the podium during House debate.

The KFL legislative team always sought her input on new pro-life measures and her counsel in persuading wavering reps to vote for life.

“Jan had the courage of her convictions. She was a pro-life champion,” remembered KFL president, Joe Patton, who served as a state legislator with her from 2007 through 2012.

Kansas Catholic Conference executive director Michael Schuttloffel commended her. “Jan served in the front lines of the greatest human rights battle of our time: the fight to protect innocent, defenseless, unborn human beings from death by abortion.  When others succumbed to political pressure on this issue, Jan stood strong as Gibraltar.”

Lance Kinzer, past KFL president and a State rep from 2004-2014, also had deep respect for her professionalism. “One of the most striking things about Jan was her attention to detail; she truly read every word of every bill, every amendment, and every conference committee report. She did this because she understood that small details mattered in the way a new law would be interpreted, applied and enforced. To me, the work ethic associated with this level of effort was the most impressive thing about her –and made her really stand out as a legislator.”

As State Rep, at the close of the legislative session in 2016, Pauls pushed hard to get Simon’s Law passed via conference committee. The measure reflected her long-time commitment to reforming Kansas law to protect children and families. (The measure became law this July.)

In our experience, Rep. Jan Pauls did not aspire to preeminence, prosperity, position, promotions, plaudits or popularity.

Rather, she was a wise and hard-working servant of Kansas and champion for life.  May she rest in peace.

Charlie was posed with his British passport

The parents of Charlie Gard are begging British Prime Minister Theresa May to make good on her statement to Parliament that she was confident the hospital which is determined to remove Charlie’s life support “always will consider any offers or new information that has come forward with consideration of the well-being of a desperately ill child.”

UPDATE: in a great turn of events,  British High Court to hear “fresh evidence” in Charlie Gard case

In the UK Mail, Connie Yates and Chris Gard assert that five world specialists have recommended their baby receive the experimental treatment they have long sought.

This is in stark contrast to the official opinion of London’s Great Ormond Street Hospital (GOSH) that Charlie cannot be helped and attempts to do so could harm him.

UK Prime Minister May

Connie told reporters she has sent a letter to Prime Minister May pointing out evidence in favor of the experimental treatment that is not part of the court record. She is hoping that the Prime Minister will use it in her private meeting with President Donald Trump scheduled today during the G-20 summit in Hamburg, Germany.

Also early Friday comes news of two developments– born of urgency and desperation– designed to help block the imminent death of Charlie.

In February Connie and Chris originally sought a court order to compel GOSH to release their son, who suffers from Mitochondrial Depletion Syndrome (MDS), a debilitating chromosomal condition. They intended to travel with him to the U.S. for “nucleoside bypass” treatment, but were rejected in every court.

As Charlie’s plight became more desperate and more public, Pope Francis and President Donald Trump have offered to help in any way possible. Today’s developments, which began earlier, involve (1) two American hospitals and (2) the Vatican.

The first development People magazine reported, came from New York Presbyterian Hospital/Columbia University Medical Center. They offered to admit Charlie for treatment onsite or, alternatively, to ship the experimental bypass medication with instructions to GOSH where Charlie has been a patient since October.

Speaking Friday to Good Morning Britain TV, Charlie’s mom Connie said a meeting with GOSH was set for 11 a.m. Friday to discuss possibly administering the experimental oral medication. She told the media that five doctors in Europe and the U.S. who specialize in MDS support that route, with about a 10% chance of it working for Charlie. She explained that 18 people have already benefited from it, with some experiencing “amazing responses, very quickly.”

Pope Francis

The second hopeful development for Charlie is possible Vatican issuance of a passport for him. The thought is that if Charlie is a citizen of the independent, sovereign state he would not be subject to the “death warrant” supported by the British and European courts.

The Sun quoted a highly placed Vatican source commenting that issuing citizenship to Charlie is “unprecedented” but if it allows current legal barriers to “be overcome, then so be it.”

The Pope has expressed a “personal interest in Charlie” and Vatican Secretary of State, Cardinal Pietro Parolin says, “We are doing whatever we can.”

GOSH officials continue not to release any comment on the situation, attributing the silence to their duty to guard patient privacy.

PUBLIC OUTCRY, PRIVATE ANGUISH
Frantic calls to save Charlie from an unjust death continue to flood the Internet and inspire ongoing public events.

Yesterday, 40 Members of the European Parliament signed onto an open letter expressing their “full support” for Charlie and his parents. “We deem ourselves obliged to voice our deepest concerns about the outrageous outcome of Charlie’s case, which infringes Europe’s most fundamental values, particularly the right to life, the right to human dignity and personal integrity.”(See the full letter.)

Connie disclosed to the BBC that the Pope’s intervention earlier this week came after she wrote a letter to him.

Charlie’s parents find solace in hospital chapel

She said, “It does give us a hope definitely, because there was no hope left. Charlie was going to die on Friday and, you saw the video we did, we were absolutely devastated. We had no control over it, the way it was done. And then it was going to be on the Monday instead but I think the White House got involved over the weekend and then that changed things.”

Connie described to the ITV audience the “absolute living hell” of recent days, having expected their son to die last week. “You can’t even put it into words, how horrible it is that he’s our own flesh and blood and we don’t have a say in his life,” she said.

Thursday night, the couple released a photo of them in the hospital’s St Christopher’s Chapel — where they retreat when things “simply get too much to bear.”

On Good Morning Britain on Friday, Connie assured the public, “we are completely devoted to [Charlie] and he’s not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn’t do it.”

She then added: “Euthanasia is illegal. Suicide is illegal. How is this legal?”

Charlie & dad in hospital

After months of competing British headlines over the now international  battle to save baby Charlie Gard’s life, today’s UK Express  may clinch the title: “Donald Trump to roast Theresa May on the heartbreaking Charlie Gard situation’ at G20.”

The Express reports that President Trump has scheduled an hour long appointment with Prime Minister Theresa May on Friday, during the time that world leaders assemble for the G2- world summit in Hamburg, Germany.

Thomas Hunt reported, “Although the reasons for the meeting have not officially been disclosed, the insider suggested the hour–long meeting, which will occur during the G20 summit in Hamburg, will center on the desperately ill 11–month–old boy. The source added the US President is said to have ‘a very good understanding of the whole case’.”
 
The same White House source told the Daily Mail last night
“The President is deeply moved by the heartbreaking situation facing Charlie Gard and his parents. Although the President himself has not spoken to the family, members of the administration, assisted by British officials, have done so. As a father and grandfather, President Trump understands the limitless love one has for a child and he wishes to be helpful to Charlie Gard and his family, as does Pope Francis and millions of families worldwide….he is willing to provide assistance should they need any.”

Prime Minister May faces seemingly ironclad rulings from three UK Courts  (The High Court, Appeal Court, and Supreme Court) and the European Court of Human Rights,  all sanctioning the removal of Charlie’s life support. It would appear they have not given her any wriggle-room when they insist Charlie’s “best interests” dictate he must die at the hospital.  Now.

His parents vehemently disagree and refuse to give up. Chris Gard and Connie Yates have waged a relentless battle against institutional power. Eleven-month-old Charlie has a rare and debilitating chromosomal condition in which his cells cannot replenish essential energy. A natural compound, orally administered, has shown some success as a treatment in the United States.
Going viral: I am Charlie Gard

Going viral: I am Charlie Gard

GLOBAL SOLIDARITY FOR CHARLIE
Last week, after all courts opposed life for Charlie, his death seemed imminent.  A weak promise not to rush the process from the Great Ormond Street Hospital in London met with a tidal wave of global solidarity for Charlie’s parents, including viral posts of multi-language “I am Charlie Gard” arm bracelets.

Various public protests and peaceful demonstrations  are increasing. Tonight Liverpool city landmarks are decked out in blue lights for Charlie.

Responding to Charlie’s plight, Pope Francis and President Trump tweeted encouragement to the Gard family.  Connie Yates responded in return, “The support from the Pope and the President has given us hope. They are traditional men who believe in the family.”

Other nations are said to be lobbying on Charlie’s behalf. The Daily Mail’s Martin Robinson reported “Yesterday it emerged the White House has been phoning the family and also the office of Health Secretary Jeremy Hunt. And the international tug-of-love over Charlie intensified as Italy also urged Britain to help save him. The Italian Foreign Minister personally lobbied his counterpart Boris Johnson in a phone call between Rome and London.”

But Johnson rebuffed an offer from the Rome children’s hospital to have Charlie transferred there. Many Twitter users are urging President Trump to send his private plane to rescue Charlie. Get that baby on a jet and give him asylum!” said one.

And we know that the President reads tweets.

UK Prime Minister May

Charlie Gard’s desperate case for release from a London hospital before losing life-support was again made in the British parliament today, as seen in video provided by the Mirror. The response of the British Prime Minister was not encouraging.

MP Seema Malhotra addressed Prime Minister Theresa May on behalf of west London constituents Chris Gard and Connie Yates. The couple has sought since January to get their seriously declining  baby boy to the United States to try an experimental oral medication.

Eleven-month-old Charlie has a rare and debilitating chromosomal condition in which his cells cannot replenish essential energy. A natural compound, orally administered, has shown some success as a treatment in the United States.

Court action on behalf of the parents failed to uphold their objections to the Great Ormond Street Hospital’s determination that Charlie be removed from a respirator and medically assisted nutrition, effective immediately. However, last Tuesday, the hospital vaguely promised “not to rush” the process. As of the 4th of July, a Facebook-posted photo of the Gard family indicated Charlie was still alive.

MP Malhotra,
pleads for Charlie

MP Malhotra asked the prime minister for intervention on behalf of Charlie, who has been hospitalized since October. She said

“I understand the chances of improvement for Charlie are low but doctors would be able to say within three months whether Charlie is responding and whether that change is clinically beneficial. If there is any room for discretion within the court rulings for Great Ormond Street to allow Charlie to leave and to transfer his care to doctors at Columbia University, and he is sufficiently stable to receive treatment, would the Prime Minister do all she can to bring the appropriate people together to try and make this happen?”

Prime Minister Theresa May did not commit to intervening, citing the understandable “difficulty” of the situation for both parents and doctors. She then asserted she was

“confident that Great Ormond Street Hospital have and always will consider any offers or new information that has come forward with consideration of the well-being of a desperately-ill child.”

Prime Minister May’s response was the opposite of Pope Francis’ and President Trump’s who both tweeted support for the parents, see here.

TRANSFER TO ROME HOSPITAL REJECTED
Yesterday Crux news reported that the hospital has rejected the offer of the Bambino Gesu children’s hospital in Rome to takeover Charlie’s care.

Bambino Gesù (in English, Baby Jesus) had put out a statement on Monday that the hospital’s president, Mariella Enoc, instructed their health director to ask GOSH if Charlie could be moved to them.

Enoc said that GOSH

told us that, for legal reasons, the baby can’t be transferred to us. That’s one more sad note.” [However]…We are close to the parents in prayer and, if this is their desire, [still] willing to take their child, for the time he has left to live.”

On Monday Italian Cardinal Elio Sgreccia, former President of the Pontifical Academy for Life, analyzed little Charlie Gard’s case and offered “10 critical points” for consideration in the Italian daily La Stampa.

The Cardinal criticized the improper “dynamic” between the decisions of the medical team and the will of the parents as well as the ruling of the European Court of Human Rights, for “assuming a purely procedural position,” instead of examining “passive euthanasia on a new-born.

Even if experimental treatment is withheld from Charlie, he is owed the provision of life support services. “A person affected by an ailment considered, in the present state of medicine, as incurable,” the Cardinal wrote, “is paradoxically the subject that, more than any other, has the right to request and obtain continuous assistance and care, attention and devotion.”

Charlie Gard’s parents, bedside, July 3”

In a Greek tragedy or Shakespearean play, a “Deus ex machina” ending is the resolution of a seemingly unresolvable situation with an unanticipated “intervention by the gods.”

In the tragic real life-and-death drama of baby Charlie Gard, facing court-supported withdrawal of hospital-administered life-support, surprising recent interventions via Twitter have been very welcome.

We can only hope that support from Pope Francis and President Trump can save Chris Gard’s and Connie Yates’s little boy from a hospital that insists he should “die with dignity.”

Eleven-month-old Charlie has a rare and debilitating chromosomal condition in which his cells cannot replenish essential energy. A natural compound, orally administered, has shown some success as a treatment in the United States. Chris and Connie have been working feverishly since January to get their son to the U.S. for that alternative treatment. Over their strenuous objections, however, they had faced the court-ordered death of their son this past weekend.

Pope Francis

But Pope Francis said on Twitter that “to defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.” The Pontiff also tweeted that he prays for them [Charlie’s family], “hoping that their desire to accompany and care for their own child to the end is not ignored.”

President Donald Trump tweeted, “if we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.” The Washington Examiner reported this Monday from White House media affairs director, Helen Ferre:

“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.”

President Trump

Following the news of Vatican and American offers of support, a spokesman for the family said: “Chris and Connie are overwhelmed with emotion that President Trump and the Pope have spoken publicly of their support. Their kind words have given them so much comfort. They remain at Charlie’s bedside and his condition remains stable.”

BACKGROUND
Between April and June, rulings from the European Court of Human Rights, and three UK courts, supported the “futile care” assertion of the Great Ormond Street Hospital (GOSH) that Charlie’s very “existence” there was “inhuman” and it was in his “best interests” that life-support be discontinued.

Orders to unplug his respirator and give only palliative care were actionable last Friday, but at press time Charlie is presumably still alive and the status of life-support unknown.

Months of public protests, petitions to UK officials and nearly $1.8 million in financial pledges have seemed ineffectual and unable to engage the concern of mainstream media to the bullying of Charlie’s parents.

That all changed when support for their plight came this weekend from the two of the most influential voices in the world.

In addition, on Tuesday, the UK Metro news revealed that both an unnamed hospital in the US and the Vatican’s Pediatric Hospital, Bambino Gesu, have offered to treat Charlie Gard for free in order to prevent Great Ormond Street Hospital from ending his life.

WHO DECIDES?
These high-profile developments have initiated more and more media attention to Charlie and the fundamental question of the inviolability of parental rights.

Arturo Estopinan with son treated for similar condition that Charlie Gard has

The Daily Mail reported on the debate over Charlie Gard held on Tuesdays’ Good Morning Britain TV show, featuring Arturo Estopinan, a Congressional aide from Baltimore.

Estopinan said his son would be dead now if they had lived in the UK. Arturino, Jr. was given two months to live in 2011 when he was immobile, except for movement of his eyes. Now six years later, after the U.S. oral treatment, he is “a happy boy” who “can move his hands, fingers, feet and arms.”

Estopinan and his wife Olga have become close friends of Chris and Connie since their son has a condition similar to Charlie’s and was aided by the same innovative oral medication sought for Charlie.

On the show, Estopinan was opposed by a British physician who asserted that “to extend Charlie’s life will create more suffering…sometimes real parental love is letting go.

Mr. Estopinan strongly objected, saying,

“What right do you have to play God?… sir, your position is 100% wrong…my son is a happy boy…on a ventilator five years…and much improved from his [immobile] condition.”

Also in solidarity with the Gard family is Terri Schiavo’s brother, Bobby Schindler, whose Life & Hope Foundation works to support the medically fragile. He said, “At issue is whether [Great Britain’s system of] universal healthcare means that bureaucrats and judges will determine appropriate treatment, or whether parents like Charlie’s with the energy, finances, and physicians to care for their child will be allowed to do so.”

Bioethics author Wesley J. Smith also strongly criticized the UK’s position against Charlie as “an act of bioethical aggression that will extend futile-care controversies, creating a duty to die at the time and place of doctors’ choosing. And that raises a crucial liberty question: Whose baby is Charlie Gard? His parents’? Or are sick babies— and others facing futile-care impositions— ultimately owned by the hospital and the state?”

Estopinan believes that President Trump’s offer has “saved” Charlie. It is yet to be seen, however, whether modern “deus ex machina” interventions can rescue Charlie from the UK government’s death grip.