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Charlie Gard's parents walk out of hearing on treatment options
itv.com ^ | 7/13/17 | itv

Posted on 07/13/2017 11:31:01 AM PDT by ColdOne

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To: exDemMom

This dr believes he can help Charlie. That’s good enough for me.

‘The judge in the infamous Charlie Gard case has allowed the name of the expert neurologist who thinks experimental therapy will help the infant boy to be revealed. The expert is none other than a Harvard-trained neurologist who is a professor at the prestigious Columbia University.

Michio Hirano, MD, is a Professor of Neurology at Columbia. Hirano serves as Chief of the Neuromuscular Division, Co-Director of the CUMC Muscular Dystrophy Association clinic, and Director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases. He evaluated patients with myopathies and other neuromuscular disorders. Dr. Hirano received his B.A. from Harvard College and M.D. from the Albert Einstein College of Medicine. At the Columbia University Medical Center (CUMC), he did his neurology residency training and a post-doctoral fellowship in neuromuscular genetics under Drs. Salvatore DiMauro and Eric Schon.

Hirano’s research focuses on mitochondrial diseases and genetic myopathies. He is participating in the clinical trial of idebenone for MELAS patients. Together with Co-Principal Investigators, Drs. Salvatore DiMauro and J.L.P (Seamus) Thompson, Dr. Hirano is co-directing the North American Mitochondrial Disease Consortium (NAMDC).

Hirano serves on the NIH Therapeutic Approaches to Genetic Diseases (TAG) study section, Medical Advisory Committee (MAC) of the Muscular Dystrophy Association, and Scientific Advisory Board of the United Mitochondrial Disease Foundation.

Charlie suffers from a rare genetic disorder, mitochondrial DNA depletion syndrome, which can cause weakened muscles and organ dysfunction, among other symptoms, and though his parents have raised money for additional treatment and hospitals around the world have volunteered their services, hospital officials have refused to allow the infant to be released to his parents. Hirano is clearly an expert in the field and a specialist who is intimately familiar with Charlie’s condition.’

http://www.freerepublic.com/focus/f-chat/3569185/posts


121 posted on 07/14/2017 5:02:08 PM PDT by Fantasywriter (Any attempt to do forensic wotk using Inernet artifacts is fraught with pitfalls. JoeProbono)
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To: Fantasywriter
You must have missed the testimony of the dr who said the treatment had a 10-56% chance of helping Charlie. This dr has agreed to fly from NY to London to evaluate Charlie firsthand.

And what, exactly, does that mean? How does a physician, whose training is *not* the minute molecular level detail of the body's function, and who thus may *not* be able to expertly assess how a drug would work, judge whether a specific treatment is likely to work or not? Especially when there is no empirical evidence to inform that judgment?

122 posted on 07/14/2017 5:08:04 PM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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To: exDemMom

A friendly tip. You may as well give up. I do not, and never will, believe you are more qualified to assess and help Charlie than Dr. Michio Hirano. You would be wasting a little of my time and a lot of yours, if you try to persuade me that you the medically superior authority in this case.


123 posted on 07/14/2017 5:17:34 PM PDT by Fantasywriter (Any attempt to do forensic wotk using Inernet artifacts is fraught with pitfalls. JoeProbono)
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To: Fantasywriter

that you the = that you are the


124 posted on 07/14/2017 5:25:43 PM PDT by Fantasywriter (Any attempt to do forensic wotk using Inernet artifacts is fraught with pitfalls. JoeProbono)
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To: exDemMom
I agree....

Thank you for explaining this in layman's terms. I had read about this case when he was first diagnosed. The Hospital also understood this treatment early on but the news agencies fail to make that known other than an occasional footnote..... ......Unfortunately the parents do change and sometimes don't seem to understand, or don't want to, when they are informed.....all this attention has not helped the parents. In a TV interview the mother said there was a chance her son could be a ‘normal’ little boy...but of course that will never be so.

We were so grateful when my family members wife finally came to her senses....her son finally got through to her. It was not drawn out as with Charlie....only a couple weeks....but difficult seeing my brother 'suffer more from the treatment' he should not have had to endure. Charlie unfortunately is not going get better from his illness...I think of the parents in another case who would not let her 'dead' girl go.....her dead body is in an apartment with her mother now as the medical facility, who took her after all the legal ruckus, would not continue to sustain a dead body.... I will spare you the details of the room she is kept in and the entire atmosphere. Thank you again....and may God take this young child home soon....that is my prayer.

125 posted on 07/14/2017 5:34:06 PM PDT by caww
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To: Fantasywriter
Michio Hirano, MD, is a Professor of Neurology at Columbia. Hirano serves as Chief of the Neuromuscular Division, Co-Director of the CUMC Muscular Dystrophy Association clinic, and Director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases. He evaluated patients with myopathies and other neuromuscular disorders. Dr. Hirano received his B.A. from Harvard College and M.D. from the Albert Einstein College of Medicine. At the Columbia University Medical Center (CUMC), he did his neurology residency training and a post-doctoral fellowship in neuromuscular genetics under Drs. Salvatore DiMauro and Eric Schon.

I had seen Hirano's name mentioned before, but not that he is specifically the doctor that the parents had pinned their hopes for a miracle on.

Earlier today, I referred you to a post that I wrote a couple of days ago, in which I specifically analyzed Hirano's work, as well as other literature in the field.

Hirano has treated genetically modified mice for a thymidine kinase 2 defect, by feeding them deoxyribonucleotides. He did not cure those mice, but prolonged their lives [before they succumbed to the disease]. I do not know, because the article describing the work is behind a paywall so I could only read the abstract, how long their lives were prolonged. Is it prolonged by 5%? One week?

And I will bring up again the fact that the disease little Charlie has is *not* thymidine kinase 2 deficiency, but is a result of a mutation in the ribonucleotide reductase small subunit B gene (RRM2B). Different genes involved, different mechanisms of pathology--even if on the gross physiological level, the symptoms of the disease appear similar. With my expertise as a biochemist, I do not see a biochemical rationale for thinking that a treatment for the one condition will have *any* effect on the other condition.

My other objection is one that I have already mentioned, and is related to the drug development pipeline. Testing a putative drug in cell culture or in rodents is a *long* way from testing it in clinical trials, and even further from its use in the clinic. One of the reasons that new pharmaceuticals are so expensive is that for every successful drug that makes it to FDA approval, something like 150 putative drugs were tested and discarded for various reasons. Hirano's testing is extremely early stage, still several years out from clinical trials. For ethical and moral reasons, drugs at this stage of development are not offered to human patients.

126 posted on 07/14/2017 5:39:37 PM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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To: caww
...I think of the parents in another case who would not let her 'dead' girl go.....her dead body is in an apartment with her mother now as the medical facility, who took her after all the legal ruckus, would not continue to sustain a dead body.... I will spare you the details of the room she is kept in and the entire atmosphere.

I am quite aware of that case, and on occasion, try to find if there is any new development there. There has not been any news for at least a year. For all we know, the heart finally stopped beating and the family buried her quietly...

127 posted on 07/14/2017 5:42:22 PM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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To: Fantasywriter
A friendly tip. You may as well give up. I do not, and never will, believe you are more qualified to assess and help Charlie than Dr. Michio Hirano. You would be wasting a little of my time and a lot of yours, if you try to persuade me that you the medically superior authority in this case.

That's okay.

On biochemical matters, I do advise physicians. My job is to understand how the body works at the molecular level, and their job is to fix it--if the technology exists. Without people like me--PhD scientists--there would be no physicians.

128 posted on 07/14/2017 5:45:59 PM PDT by exDemMom (Current visual of the hole the US continues to dig itself into: http://www.usdebtclock.org/)
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To: exDemMom

I would hope that is the case....however she’s been out of any facility the last I knew and her mother refused Physicians to examine her daughter.

Hopefully she has been buried...and they have moved on.


129 posted on 07/14/2017 6:04:48 PM PDT by caww
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To: novemberslady
Except in Florida...

The state ordered execution of Terri Schiavo will never be forgotten, nor forgiven.

The vast number of people who actively thirsted for her death by starvation and dehydration, claiming a feeding tube was artificial life support...shocked me to my core.

I understand little Charlie needs more than mere food and water to survive.But the vast number of people thirsting for his death is eerily similar.

Prayers sent for Charlie Gard, and his parents.

130 posted on 07/14/2017 9:53:36 PM PDT by sarasmom
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To: exit82

OK yes I was of course aware of President Trump’s offer, but I would hardly have thought that an official government-to-government communication.


131 posted on 07/15/2017 1:14:52 AM PDT by Winniesboy
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To: Tucker39
I have never seen a more serene expression on a sleeping child’s face.

Your post jogged my memory from 15 years back. We had this beautiful Lhasa Apso female dog who was 14 years old at the time. Her name was Jillian. She was just a marvelous pet. She was our first baby, and then followed by our own 2 wonderful daughters. Jillian was very smart, I swear she understood at least 2 dozen English words. She was lovable, very protective with a loud bark for a 15 lb dog, pretty, and never was sick in 14 years. Then it happened. She got sick. Stopped eating. Lost weight. The vet diagnosed cancer of internal organs. All 4 of us were heartbroken over the news. The vet said it was terminal and she was in lot of pain. Duh...we already knew that because the always cheerful dog was laying in fetal position whimpering. So we take Jillian to the Vet's office to put her to sleep. There we were escorted to a private room. The vet gave Jillian a shot of some sedative. It must be strong because she immediately stopped whimpering and began snoring which she always did when well. The vet told us to take as long as we wish to say goodbye. My wife and I held Jillian in our arms, caressed her, and we were both bawling. But Jillian looked peaceful, no sign of pain on her face. After a long time we called the vet, he administered a second shot, and that made her heart stop.

132 posted on 07/15/2017 7:01:39 AM PDT by entropy12 (Russia did not elect Trump! Americans did!!)
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To: sarasmom

That was a beautiful post. I still hurt every time I think of Terri Schiavo. When the State decides an innocent must die—and die in an excruciating way—it is evil on parade. What kind of demon-ghouls would prevent loved ones from even swabbing dry, cracked lips? I wonder how many votes Jeb lost over his cowardice in Terri’s case? The entire episode was grotesque.

I join you in prayers for Charlie and his parents. The sooner this baby can be released from his gaolers the better.


133 posted on 07/15/2017 7:27:53 AM PDT by Fantasywriter (Any attempt to do forensic wotk using Inernet artifacts is fraught with pitfalls. JoeProbono)
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