openpolitics.com

Charlie Gard, who turns 11 months old on Tuesday, was born with an extremely rare genetic disease. He is blind and deaf, and he cannot breathe or move on his own. He suffers from persistent epileptic seizures.

.. The London hospital that is treating Charlie has asked permission to remove him from life support. His parents want to take him to the United States, where they believe an experimental treatment has a chance — however remote — of prolonging his life, even though the disease has no cure.

.. Judges in the case have acknowledged that the case highlights differences in law and medicine — and an American willingness to try anything, however unlikely the possibility of success — but have held that prolonging the infant’s life would be inhumane and unreasonable. The case echoes the one of Terri Schiavo

.. If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.

.. Charlie was born on Aug. 4 with encephalomyopathic mitochondrial DNA depletion syndrome. He is thought to be one of only 16 children globally with the condition, the result of a genetic mutation.

.. They have raised more than 1.3 million pounds, or about $1.7 million, to help finance experimental treatment in the United States.

.. The High Court ruled that Charlie would face significant harm if his suffering were to be prolonged without any realistic prospect of improvement. Moreover, it said the experimental treatment, known as nucleoside therapy, would not be effective.

..Money is not at issue; an academic medical center in the United States has offered to provide the experimental treatment.

… I agree that it is very unlikely that he will improve with that therapy.”

..“it was most likely Charlie was being exposed to continued pain, suffering and distress, and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.”

..a law, signed by President Ronald Reagan, that defined instances in which withholding medical treatment from infants could be considered child abuse, but also provided that in certain cases doctors and parents might choose to withhold treatment from seriously handicapped babies when such action would merely prolong dying.

..in the United States, if parents insisted on continuing life-prolonging treatment against a doctor’s advice, the child would simply be transferred to another institution willing to comply with the parents’ wishes.

 .. This is a tragic case and Trump getting involved is frankly opportunistic and disgusting. I also wish the US media would actually report some of the facts on this case.

..  In light of what the president of the United States proposes to do to his fellow citizens, both very young and very old, by taking away their health insurance coverage and dramatically reducing the coverage of Medicaid, his tweet of concern and “offer” can only be seen as a self-serving and hollow stunt.

.. Now, if President Trump and the Republican Party would act as concerned about those here needing health care, I would really be impressed.

.. Experimental treatment is research that may help this child or others.

.. If Mr. Trump is looking for a way to help cases such as that of Charlie Gard, he can begin by reversing his plans to cut $5.8 billion from the budget of the National Institutes of Health. Experimental treatments and the promise they hold come into being in the United States with broad support from NIH funding. To the extent that such support is diminished, as per the president’s plan, the promise of life saving advances in American health care is denied

.. Trump is offering support for a child, with no hope living. Yet where is the support for the millions of currently healthy children and their families in the US who will face, illness and death because of TrumpCare.

.. He is trying to make political points by injecting himself into a singular case of a very cute white baby. I give him no kudos because I am pretty sure he would not be doing the same for a cute black baby, and I know, because he has made it clear how little he cares, that he wouldn’t do the same for a cute baby (black, brown or white) born in this country.