Image Credits: Charlie's Fight

Compassionate people around the world have had their heartstrings tugged recently by the story of Charlie Gard, a terminally ill child whose parents are fighting for the right to seek experimental treatment for him. Social media is abuzz with talk of the fight his parents are facing in the British court system, which has stepped in and said that his parents are not allowed to seek further treatment and that his life-support should be turned off. As you can guess, this has caused an uproar around the world.

Here’s what you need to know about Charlie Gard to have an informed opinion on the case that has the world talking. It has already drawn commentary from President Trump and Pope Francis, among others.  Conservatives around the world are viewing this as a pro-life issue. Many see this as a major concern about the power of the state to make decisions over the wishes of the parents.

Who is Charlie Gard and what is his condition?

As of the writing of this piece, Charlie Gard is nearly a year old. Born on August 4th, 2016, he was a typical baby for the first few weeks of his life, but began to decline around the two-month mark. Soon, Charlie was diagnosed with a rare genetic condition known as mitochondrial DNA depletion syndrome, which has progressively stolen his ability to function on his own. He relies on a ventilator to breathe, is deaf, and has experienced seizures.  His parents, Constance Yates and Chris Gard, have been by his side every minute, including the past several months in the hospital.

Why are we hearing about Charlie all over the world?

Controversy arose because Charlie’s parents, Chris and Connie, want to take their son to the United States for experimental nucleoside treatment. The parents believe this treatment would improve his condition or provide him a better quality of life. They argue that this nucleoside theory would help kick his mitochondrial DNA back into working order. In fact, it could potentially put him back on the right track.  The hospital that is treating him disagrees. It argues that it is in his best interest for his ventilator to be turned off and for doctor’s to provide only palliative care, that is making his final days comfortable and taking no further efforts to save him.  Charlie’s parents don’t want the British tax-payer to keep paying for Charlie to live. That is not the issue at hand. They wish to use their own money and money they have fund-raised to take Charlie to the United States for this experimental treatment. On a GoFundMe page alone, Charlie’s parents have raised over $1.75 million.

When the case came to court, the hospital cited a former appeal’s court decision that said, The welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the child. There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable.”

Essentially, a judge can decide if it is in the child’s best interest to have continued care. That is what was done in this case.  The judge decreed, “It is lawful and in Charlie’s best interests for artificial ventilation to be withdrawn and for his treating clinicians to provide him with palliative care only.” His parents did not back down though. They continue to fight for him.

What is this case really about? Healthcare or human rights?

The case of Charlie Gard is about more than just medical treatment, it is about parental rights. This likely reminds readers of the case of other children who have been written off by the system despite the parent’s wishes. Charlie clearly cannot make decisions for himself. In most areas, when a child cannot make decisions, the charge falls to the parents. The British government has stepped in between them though. Charlie’s parents are not asking for the British government or hospital to do anything other than let them leave with their son and seek their miracle elsewhere. So far, that has been prevented. This is not an issue about being able to afford treatment, but about being able to obtain treatment.

What is going to happen now?

Both a US hospital and a Vatican hospital have agreed to take Charlie Gard. As of the writing of this article, Charlie is still being held by a British hospital. However, they have agreed to let a US doctor that specializes in the issue at hand come to the hospital and evaluate Charlie.  Either Charlie will be allowed to travel to the Vatican or the United States for treatment, which may or may not improve his condition, or he will stay in England and die, likely before he reaches his first birthday, and against the will of his parents.

Where can I learn more?

If you’re looking for some opinion articles on the Charlie Gard case, check out these by the New York Times, Fox News, the Wall Street Journal, or the Washington Post. You can get updates straight from Charlie’s family here or follow his mother, Connie Yates, on Twitter where she often retweets notable statements on Charlie and shares updates.  

Aryssa D
FFL Cabinet Member