Little Charlie never had a chance from the moment he was conceived with two defective copies of the RRM2B gene that is necessary for life.
There is not and never was an experimental treatment that had a scientifically supported chance to save him. There only was a fiscally motivated researcher who irresponsibly told Charlie’s parents that he was willing to give Charlie an almost identical experimental “treatment” that the GOSH hospital had already decided would be unethical once they determined how profound Charlie’s brain damage was. At best, there was a minuscule chance the “treatment” might have improved his muscle tone. This may not have been good for Charlie, who was suffering status epilepticus—prolonged seizures—since November. Improved muscle tone could have led to the seizures being convulsive instead of just confined to brain activity.
The financial interests of Dr. Hirano in the case are recorded in the court proceedings. He had not examined Charlie or even really read his records before testifying by video that he was willing to “treat” Charlie.
Charlie’s parents can help children in the future, if they turn his body over to research. By studying the gene defects and understanding the full range of their effects, researchers can rationally design and test various therapeutic approaches, and perhaps come up with something that will actually stop the damage in children like Charlie, before the disease has a chance to destroy their muscles and brain.
Every single day, dozens of infants are born who, like Charlie, have a condition incompatible with life. Instead of focusing on the fact that multiple researchers, physicians, and judges looked at the evidence and agreed that experimenting on Charlie would not have been in his best interest, how about focusing on supporting the research that leads (ethically) to cures for these children?
Dr Hirano said: ‘I became involved in Charlie’s case when I was contacted by his parents, and I subsequently agreed to speak with his doctors to discuss whether an experimental therapy being developed in my lab could provide meaningful clinical improvement in Charlie’s condition.
‘As I disclosed in court on July 13, I have relinquished and have no financial interest in the treatment being developed for Charlie’s condition.
‘Unfortunately, an MRI scan of Charlie’s muscle tissue conducted in the past week has revealed that it is very unlikely that he would benefit from this treatment.’