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The case of baby Charlie Gard touched the hearts of the world in 2017.
His parents, Connie Yates and Chris Gard, were locked in a high-profile legal battle with medical professionals over the care of Charlie, who suffered from a rare genetic disorder: encephalomyopathic mitochondrial DNA depletion syndrome (MDDS).
They wanted to bring Charlie to the United States for an experimental treatment, but Great Ormond Street Hospital and other medical professionals opposed the idea.
They said Charlie’s condition had worsened to the point where the damage to his brain and other organs was too severe for treatment to help.
After numerous hearings, the couple lost the battle and Charlie passed away in hospice when he was 11 months old.
Now Yates and Gard, who welcomed baby Oliver in August, are pushing to pass Charlie’s Law to give parents of seriously ill children more options when they disagree with hospitals.
Here they explain how baby Oliver has inspired their fight and why they are pushing for the bill to become law on Charlie’s behalf.
For many people, the pandemic has been, and continues to be, a time of unimaginable hardship.
In these challenging times, we experience a time of remarkable joy – welcoming our baby boy Oliver into the world in August. We have cherished every moment since.
Parenting was something we feared we would never experience again.
After losing our precious Charlie to a rare genetic mitochondrial disease in July 2017, just a week before his first birthday, we were devastated.
Afterward, we promised that we would never allow the parents to experience what we did: a lengthy and harrowing court battle when the hospital doctors treating him wanted to remove Charlie’s life support.
Oliver with his mother Connie Yates and photos of Charlie who died in 2017
We desperately fought to be allowed to bring him to the United States for pioneering treatment, but tragically we lost our case in the Supreme Court.
In the end, when we disagreed with the doctors and the hospital on the best treatment for Charlie, communication between us broke down.
They left us isolated, without mediation or access to an independent medical ethics committee.
The only option left was to go to court and waste the precious time we had with Charlie.
We went on to configure the Charlie Gard Foundation, to be the UK’s leading charity supporting children, adults and their families who have been affected by mitochondrial disease.
We are going to have a virtual ball fundraising event on Saturday November 28th at 8pm to raise funds and awareness about charity, which we would love for people to join.
Losing Charlie has made us appreciate every moment with Oliver so much more; sleepless nights, and even when he cries.
We wish each day that we share more of these moments with Charlie.
We know Charlie looks down on us and now we’re even more determined to make Oliver’s older brother proud.
So we go ahead, full steam, to see Charlie’s law progress through the House of Commons.
Since 2017, we have been working with parliamentarians, colleagues, NHS professionals, world-leading medical ethicists, and legal experts to create a new bill that helps physicians and parents resolve disagreements at an early stage.
Charlie Gard was at the center of a long court battle
Bambos Charalambous, Labor MP from Enfield Southgate, has taken a central role in helping us achieve this through his Private Members Bill: The Child (Access to Treatment) Bill – Charlies Act, which has its second reading. scheduled for February 5, 2021.
Oliver has illuminated our lives, we feel very lucky, but we know that some parents still experience the difficulties we feel.
Parents are taken to hospitals every day and told that there is no cure for their children. There must be more support for them and this bill aims to do just that.
Provides parents access to mediation services and ethics committees; your child’s medical information; legal assistance; and greater clarity for parents and physicians on whether an alternative treatment can be provided.
We never want to see another parent go through costly, devastating and traumatic legal disputes with hospitals over the treatment of a child. These legal disputes benefit no one.
That is why we will continue to push for Charlie’s Law and put a process in place to help families, doctors and hospitals resolve any differences of opinion at an early stage.
