Image via Getty.
Image via Getty.

Charlie Gard was born on August 4, 2016, with brain damage and a rare form of a mitochondrial disease which causes muscles to progressively weaken, as well as increasing brain damage as the child ages. Charlie’s parents, Chris Gard and Connie Yates, are fighting to bring him to the US for an experimental treatment, taking their case to Britain’s Supreme Court next week.

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The Guardian reports that Charlie is being kept alive by a ventilator and fed through a tube at the Great Ormond Street Children’s Hospital in London. His family has covered his medical expenses via a GoFundme, which recently topped out at £1.3 million in donations. Medical experts in the UK and a second opinion from Spain have all said that Charlie should be removed from his ventilator and given palliative care. Justice Francis, who ruled on Charlie’s case in the family division of their high court, agreed last month:

“All of Charlie’s treating doctors at Great Ormond Street are agreed that Charlie has reached the stage where artificial ventilation should be withdrawn, that he should be given palliative care only and that he should be allowed to die peacefully and with dignity,” the judge said. “Charlie has been served by the most experienced and sophisticated team that our excellent hospitals can offer.”

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However, Gard and Yates are petitioning to bring Charlie to the US to be treated by specialists with an experimental procedure called nucleoside therapy. They presented Charlie’s case to three appeal judges after Francis decided he should be removed from life support, but they ultimately sided with Francis’s ruling. The parent’s legal team is led by attorney Richard Gordon, who has argued that Charlie’s parents want to exhaust all possible options to aid their son.

“They don’t want to look back and think ‘what if?’” said Gordon, “This court should not stand in the way of their only remaining hope.”

Lawyers for the hospital’s legal team who are representing Charlie’s interests say that the treatment is experimental with “no real prospect of improving Charlie’s condition or quality of life.” The BBC reports that Supreme Court justices announced Wednesday that they will sit on Charlie’s case June 8, extending his time on life support which was set to end the same day.

A spokesperson for the hospital told the BBC, “Both the High Court and the Court of Appeal have decided that it is in Charlie’s best interests for treatment to be withdrawn. We have been asked to continue to provide treatment until the Supreme Court meets and we respect that wish.”

Contributing Writer, writing my first book for the Dial Press called The Lonely Hunter, follow me on Twitter @alutkin

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DISCUSSION

As I have written before, my daughter died when she was five in 2011, two months after being diagnosed with an inoperable and malignant brain tumor. There is no cure for her type of tumor - DIPG - and current treatments do little more than extend life for a few months.

Her mother and I made the choice to decline treatment to try to slow the tumor’s progress - daily radiation and painful chemo - and instead take her home, armed with medication to manage symptoms, so we could enjoy the time we had left free of hospitals and doctors and fear.

It was the hardest and best decision I have ever made. My daughter died with dignity, at home, with her parents right next to her. She was never afraid, and in the two months we had, we lived every single moment.

Each parent who faces the death of a child endlessly faces questions for which there is no happy answer. I can never criticize a parent for those choices. They are always the right choice. My heart goes out to this couple as they make those choices now. My only prayer for them is to recognize the time when their son needs them to help him die, rather than to help him live. It’s the most painful thing you can do as a parent, but one of the most sacred. Moreover, it should remain, within reason, the sole and absolute choice of the parents, who have to live the rest of their lives based on the end of their child’s.

People have asked me many times how I did it. How I survived those days. The truth is, I just kept being a parent. What my daughter needed from me may have changed, but the love, the comfort and the guidance never did. It’s all just part of being a mommy or a daddy.