Chris Gard and Connie Yates of Great Britian have spent the better part of a year in the fight of their lives.
They are fighting for their son’s life…and death.
Little Charlie Gard was born in August with a very rare genetic disorder called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome. In very simple terms this devastating syndome refers to the markedly decreased amount of mitochondrial DNA found in muscle, liver and brain tissues in these disorders. These are severe disorders presenting in early infancy or childhood with profound weakness, encephalopathy, seizures and liver failure. Within weeks of his birth Charlie stopped gaining weight and lost his ability to stabilize his neck and hold his little head up. Two months into his short life his respiratory function began to fail, his breathing became laborious and lethargy took over.
With his rapid decline in health his parents started doing what any of us would have. When their tiny child could no longer fight on they took up his fight tenfold. When doctors at Great Ormond Street Hospital for Children told his parents there was nothing more they could do to improve Charlie’s condition, Charlie’s parents disagreed vehemently. They argued that there was promising experimental treatment available in the United States that Charlie might benefit from. So to court they went.
The parents raised over one million Euros for the experiential therapy and other parents from all over the world came out to support Charlie’s fight. Parents with children in similar medical situations such as Charlie took the fight on as well saying their children were benefiting greatly from the therapy and why shouldn’t Charlie have a chance at improvement as well? As a mother I can not even imagine watching my children knock on death’s door every single day. I don’t think I would be able to bear the thought of others telling me that I could no longer fight on for my girls. These parents spend every day of their lives staring down at their child and they cannot take away his struggle or his pain. They are completely helpless aside from this fight. This is the one thing they can do for their child. Of course they believe this to be true, as any desperate and emotionally charged parent would believe.
Back in April the Justice Nicolas Fransis of The Family Division of the High Court of Justice wrote that there was “unanimity among the experts” that the experimental therapy would not be able to repair the structural brain damage that Charlie had already suffered. Furthermore, he wrote that “Subjecting him to nucleoside therapy is unknown territory – it has never even been tested on mouse models – but it may, or may not, subject the patient to pain, possibly even to mutations. But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?” And when you take the emotion, the sadness and the anger out of the situation this is a very sound and ethical medical decision and standpoint.