Government overreach. If ever there was an appalling case of it, you will find it in Europe right now.
Ten-month-old Charlie Gard has mitochondrial depletion syndrome, an extremely rare disease that causes progressive muscle and kidney weakness as well as brain damage. He appeared perfectly healthy when born, but after eight weeks, the couple took Charlie to the hospital where they have been day and night watching their precious son grow weaker, weaker, and closer to death.
He has been in intensive care since last October and is on life support at Great Ormond Street Hospital in London. The doctors who have treated him believe the best course of action is to remove his life support and let him die. His parents Chris Guard and Connie Yates are fighting to keep their son alive.
The hospital has even taken the parents to court and won. On April 11, the High Court judge ruled against a trip to America to seek specialized care for Charlie. The Court ruled in favor of the Great Ormond Street Hospital doctors who claim the experimental treatment available in the U.S. is a waste of time and not in the child’s best interest because he could endure further suffering and die. Yet, little Charlie would have already died had it been left up to those doctors.
Nonetheless, High Court Judge Mr. Justice Francis concluded that life support treatment should end and said Charlie should be allowed to “die with dignity.”
The appeal court judges gave great weight to the opinions of the Great Ormond Street Hospital doctors and upheld the High Court ruling on May 25, and three Supreme Court justices last Thursday dismissed the couple's challenge after a hearing in London.
Deadline after deadline has loomed ahead for little Charlie. Three more weeks, seven more days, six more days, as the couple fights with everything they have to save their child’s life.
Charlie’s parents took their case to the Human Rights Court in Strasbourg. On Tuesday, the day Charlie’s life support was scheduled to be removed, the court ruled that life-support for Charlie must be extended until midnight on June 19, to give Charlie’s parents’ legal team six more days to put their case forward.
They have raised over $1.6 million in their fight to bring Charlie to the U.S. for nucleoside bypass therapy, an experimental therapy that has worked on children with similar conditions – not as a cure but a reduction of symptoms.
His parents explain:
After endlessly researching and speaking to Dr’s all over the world we found hope in a medication that may help him and a Dr. in America has accepted him in his hospital. It hasn’t been tried on anyone with his gene before (he’s only number 16 in the world ever reported) but it’s had success with another mitochondrial depletion syndrome called TK2 which is similar – it’s helping children to get their strength back and live longer! We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain.
Here in the U.S., Arthur and Olga Estoinan believe their six-year-old son Arturito “would surely be dead by now” if he had not been given access to the same treatment Charlie’s parents are fighting to secure. Arturito has a similar mitochondrial depletion syndrome as Charlie and was the first person in the U.S. to be given the ground-breaking nucleoside therapy.
Meanwhile, Charlie’s parents say that he is a “prisoner” in the Great Ormond Street Hospital where the treatment is “inhuman.”
Among online articles about little Charlie, reader comments are particularly disturbing. The number of individuals who agree with the courts and doctors is astonishing. A general attitude prevails that Charlie’s irreversible brain damage renders him useless to society. Somehow it is in his best interest to let him die rather than seek out treatment that could possibly help him live.
It is a wretched society that readily accepts government intrusion to perpetrate the killing of a child.