Terminally ill baby, Charlie Gard, who has been denied by British courts and doctors to seek experimental treatment in the United States, will now be seen by an American neurologist who will make the case to put the baby through experimental treatments that may not only help the baby live, but improve his quality of life, according to The Telegraph.
The story of Charlie Gard captured the attention of the mainstream public in June, a 10-month-old baby with a rare genetic disorder — a mitochondrial depletion condition — that prevented energy from reaching cells throughout Charlie’s body. Due to this, the baby cannot breathe without help from a ventilator, move his arms or legs, or even maintain organ function without help from machines.
The baby’s parents, Connie Yates and Chris Gard, raised $1.8 million in private donations in order to have the baby undergo experimental treatment in the U.S. called nucleoside bypass therapy. According to The Sun, this treatment will give him the naturally occurring compounds his body isn’t able to produce through oral medication.
The drug is untested on even mice with mitochondrial DNA depletion syndrome. However, mice with different mitochondrial conditions that have received this treatment exhibited “dramatic clinical improvements.”
According to The Sun, seven specialist doctors, including one in the U.K., have recommended Charlie receive this treatment as a result.
However, British doctors would not allow the treatment to occur, nor would the British courts, or the European Court of Human Rights. The Great Ormond Street Hospital specialists overseeing Charlie’s care said it would just be kinder to let Charlie “die with dignity” at their facility, prohibiting Yates and Chris from even taking him home to die.
Charlie Gard’s parents have charged that they are being “held captive” by the NHS as a result of the British government’s handling of their case.
Mr Justice Francis of the High Court ruled in April that Charlie would be taken off the ventilator, and would receive palliative treatment only until he passed away, despite his parents’ wishes.
According to hospital, the British National Health Service has the right to take Charlie’s care out of the hands of his parents if doctors believe further treatment is futile. Parental rights has been a major issue circulating around Charlie’s case, and in an FAQ about Charlie, the NHS stated where Charlie’s parent’s rights end in the British system:
“Although Charlie’s parents have parental responsibility, overriding control is by law vested in the court exercising its independent and objective judgment in the child’s best interests,” the hospital wrote.
Numerous attempts were made to get help to Charlie, including Rep. Trent Franks (R-Ariz.) and Rep. Brad Wenstrup (R-Ohio) introducing legislation to grant Charlie citizenship, and the Hospital of the Vatican — with support from President Donald Trump and the Pope — requesting the baby be taken to their facility. However, the British health care officials would not budge.
But the British High Court has now ruled that a U.S. professor of neurology at the Columbia University Medical Center in New York, Dr. Michio Hirano, will be allowed to visit GOSH in London on Monday and Tuesday to discuss the experimental nucleoside bypass therapy treatment with Charlie’s doctors.
Mr Justice Francis ruled in favor of allowing Hirano to see Charlie after the Family Division of the High Court in London held a hearing with Charlie’s parents on Thursday. Delivering his findings via a link from New York, Hirano gave new evidence that nucleoside therapy has positive effects, and could improve the baby’s muscle strength by 10 percent. Additionally, Hirano claimed his treatment could improve brain function a “small but significant” amount.
Hirano will be able to make the case for his treatment to hospital specialists next week; however, The Telegraph reported that the British specialists believe that the treatment is merely experimental, and will not help.
Ultimately, the decision to allow Hirano to treat Charlie rests with Mr Justice Francis, who said he intends to give his ruling on whether the treatment will be allowed to go forward on July 25, according to the BBC.